Living with limb difference since childhood

Jason1Jason Honeychurch’s life can be broken into three distinct periods. Life before his traumatic accident at 9 years of age, the life he lived until he was 15, and the life he has lived since he was 15.

Jason is 31 years old, lives in Adelaide (South Australia) and has lived his life as a right above-knee amputee since he was 15 years of age. Jason also works in the prosthetics industry, as a Prosthetic Technician, and will commence a Masters in Prosthetics and Orthotics in 2017. Jason also recently launched his own YouTube Channel and Facebook Page called ‘Limb Evolution’, where you can view videos of him doing every tasks such as walking and gardening as well as sports such as riding and running.

­Jason grew up Leonora which he describes as a town that is “an isolated one in the middle of Western Australia where Kalgoorlie, despite being 300 kilometres away, is the nearest big town”. It was in Leonora where Jason had a traumatic accident that would change his life forever. Being an industrial mining town Leonora’s “main drag” had huge trucks and cranes driving through each day. Jason had a BMX, his form of transportation, to play and get around town. Unfortunately, both forms of transportation traumatically collided when Jason was nine years old.

“I had an accident in 1994 when a big industrial mobile crane came onto the foot path as I was riding my push bike. The red mobile crane flashed before my eyes and in that moment I landed under the wheels of the crane, resulting in my legs being crushed,” explained Jason.

Jason was rushed to the small local hospital and, because of the extent of his injuries, then airlifted to Perth by the Royal Flying Doctors Service. “The doctors managed to save both of my legs, but my right leg was crushed beyond repair. I then spent the next six years in and out of Princess Margaret Hospital in Perth and had over 250 operations while doctors tried to save my right leg,” recounted Jason.

While Jason’s left leg was functional, unfortunately his right leg was not. As a result of the accident, his right leg had lost a lot of skin, muscle and bone and his right knee was permanently fused. This meant that Jason couldn’t bend his leg and that it no longer grew. By the time Jason was 15 his right leg was 10 centimetres shorter than the left one, and he had to wear a 10 centimetre Ankle-Foot Orthosis (AFO) to balance his right and left leg so he could use crutches. “Because my right leg wouldn’t bend I couldn’t walk or sit easily, let alone run or ride a bike,” described Jason.

When Jason was 15 the doctors gave him a choice to fix his leg discrepancy but not without many more operations and a lot more pain. “I was offered a ‘leg-lengthening procedure’ which, in my case, meant many pins stuck through skin and into my bone. I was also told that it would be an extremely painful procedure whereby the doctors purposefully break your leg with each turn of the pins until you stop growing,” expounded Jason. As the doctors anticipated that Jason would probably stop growing at 18, if he selected this procedure he faced another three years of painful hospitalisation.

Not long after learning about this procedure Jason had a small fall on his leg which resulted in him “breaking the bones, excruciating pain and having a right leg that looked like spaghetti”.  It was after this break that Jason said he came to his senses. “I thought more clearly about what the doctors were offering, thought about my future pathways and came to the conclusion that even more pain for a bone lengthening procedure that might not even be successful was not for me,” recounted Jason.

“I realised that my leg was not a real leg. I had lost my leg the moment it was run over by the crane. I realised that my leg would never be the functional leg that my doctors envisioned it would be and knew in my heart that there had to be a better way. That’s when prosthetics entered my mind, and from that day forth I could see myself as an amputee wearing a prosthetic leg that would give me the functionality and mobility I had not had since I was nine,” recalled Jason.

Prior to undergoing his amputation, and to ensure that Jason understood his decision, the hospital arranged for psychiatric assessments, discussions with physiotherapists and meetings with a few amputees. Jason met with three adult amputees prior to his surgery, an experience that made all the difference in his decision making.

One particular amputee had a huge impact on Jason; a man who was an above-knee amputee, in his 30s, played sport, worked full-time and was in a relationship. “I was 15 and the one main worry that played on my mind was whether or not a girlfriend would ever want to go out with me if I had a missing leg. Well, that was all clarified when I met another above-knee amputee who, after we had met, introduced me to his beautiful long-term girlfriend who not only kissed him but touched him on his prosthesis,” explained Jason. “It was at that point I knew that becoming an amputee would not only benefit me physically but that it wouldn’t stop me from having a girlfriend, something very important to an impressionable male teenager,” laughed Jason.

So at the age of 15, and with the full support of his parents and family, Jason underwent an above-knee amputation. “The first thing I remember saying to my Mum after my surgery was “Is my leg gone?” and after Mum said “Yes” apparently I went back to sleep with a smile on my face,” said Jason.

Much changed within the six weeks after Jason’s amputation. “I was fitted with my first prosthesis and started in Year 10 at Aquinas College, a boarding school in Perth that my older brother already attended,” stated Jason.

Jason2Aquinas College is an all-male school with over 1,000 students and a long history steeped in both academic and sporting achievement. “Attending Aquinas College really helped me to quickly adapt. Suddenly I had to walk up and down, I had to go up four flights of stairs just to get to my math class, I began playing sport for the first time since I was nine and I had an older brother with me who wouldn’t let me lag behind him. I had to adjust and stand up for myself very quickly and, while I hated it at times, I now realise it helped me to become the resilient person that I am today,” explained Jason.

Three particular events occurred whilst Jason was at his boarding school – work experience, discovering a passion for rowing and falling in love with his first girlfriend.

After his amputation Jason began seeing Andrew Vearing, his first prosthetist.  Andrew not only made his first prosthesis but was a trusted professional who made Jason “feel special, full of potential and could see a budding young interest in prosthetics”.  Andrew provided Jason with work experience opportunities in Years 10, 11 and 12; experiences that allowed Jason to see first-hand the “amazing impact that Andrew had on patients, and just how much respect he was held in the eyes of colleagues and patients alike”. After the work experience opportunities with Andrew Vearing, Jason then knew he also wanted to work in the prosthetics field and upon finishing school Andrew employed Jason as a Prosthetic Technician.

The second significant event that took place whilst still at school was that Jason discovered a passion and skill for rowing. “At Aquinas College all students, including me, were expected to take part in sports. I chose rowing and learned that I not only enjoyed it but that I was good at it,” revealed Jason. In Year 12, Aquinas College took part in the prestigious ‘Head of the River’ school rowing competition with Jason one of the four oarsmen selected to represent the school.

Jason Honeychurch, a 17 year old from Leonora will be in the heat of  the Head of the River action today [Sat] with Aquinas crewmates, cox Dane Fitzgibbons, Elliot Khoo, Mitchell Prebble and Matthew Huston despite the handicap of an amPutated leg caused by a road train accident.

“Head of the River is a well-known historical event in Perth which draws many spectators and media attention, and I couldn’t believe it when a photo of my team was on the front page of The West Australian newspaper the day prior,” recounted Jason. The newspaper article discussed Jason’s team, but paid particular attention to the fact that a young amputee would be representing his school. “After the article, people drove miles to come and see us race and I had heaps of strangers approach me afterwards to shake my hand and congratulate me on being the first amputee to partake. I couldn’t believe it, it was like I was a celebrity,” revealed Jason. Indeed Jason was also thrilled to be awarded with the ‘Best Oarsman Award’ after the race, a recognition that “completely floored” him.

The third event experienced during Jason’s secondary schooling years was meeting his very first girlfriend. “I used to love dancing and I always thought I would meet my first girlfriend on the dancefloor and, in fact, that’s what happened,” said Jason. At a school formal Jason met the young woman who would be his girlfriend for a couple of years. “I met her on the dancefloor wearing long pants, so she didn’t realise I was an amputee. We started chatting on the phone at night, which incidentally was a big achievement at a boy’s boarding school, and I still wasn’t sure how to bring up the ‘amputee thing’,” explained Jason. However that was all resolved when Jason featured on the front page of The West Australian newspaper for rowing, after which his girlfriend called him and said that she was so proud of his achievements and that being an amputee made no difference to her. “I was overcome by my girlfriend’s positive reaction to my limb loss, and I could then focus on the other normal things that worry teenagers when starting relationships,” disclosed Jason.

After leaving school Jason was privileged to be mentored and supported by Andrew Vearing in his first role as a Prosthetic Technician. Jason was also supported by Andrew to “pick up stumps” and move to Adelaide to continue working as a Prosthetic Technician. Initially, Jason worked at Northern Prosthetics which was followed by a move to Prostek, where he has now worked for ten years. It was also during this time that Jason completed a Bachelor of Health Sciences at Flinders University.

“When I turned 24 I decided that I wanted a tertiary education in the health sciences area. With the support of Prostek’s owner, Wayne Bowker, I was able to attend Flinders University part-time and also continue working part-time at Prostek. It was an extremely gruelling few years, but without the support of Prostek I wouldn’t have gotten through it and I can’t thank Wayne enough for that opportunity,” extolled Jason.

As a Prosthetic Technician, Jason feels “privileged” to work alongside talented colleagues and support prosthetic-using amputees to achieve their goals. Jason thoroughly enjoys assisting children and adults to receive the prosthesis designed by their Prosthetist, and is particularly thrilled when he is able to work alongside patients to create colourful prostheses that reflect the individual’s personality. “Working with kids is great because their imagination really does go wild, and I love being able to help them incorporate fabrics of their favourite superhero or cartoon character into their socket design,” enthused Jason.

To protect his own prosthesis at work Jason wears a fabric tattoo arm-sleeve over the top, as this acts as a protective barrier against all the dust in the workroom. This cover has also been the source of some interesting and informative discussions in the community. “I was recently in the supermarket, wearing shorts and the tattoo arm-sleeve over my prosthetic leg, when a heavily tattooed man came up to me to compliment me on my tattoo and enquire as to how much my full-leg tattoo cost. I grinned and said it cost $3 to the now bemused bloke. I then explained it was over the top of my prosthesis and spent a while discussing amputation and prosthetics to a very inquisitive and now more aware member of the community,” laughed Jason.

Jason has seen significant advances in prosthetics since his amputation in 2000. Initially Jason was issued with a safety knee which was very basic, and heavy. He would have to put weight onto the safety knee for it to lock. This leg didn’t have a gel-liner with a pin-lock which meant Jason had to wear thick woollen socks with leather straps that went around his waist and over his shoulder to secure the leg, something that “was very painful, heavy to wear, hot and didn’t allow for comfortable walking”. In the years after his amputation gel and silicon liners were introduced, and it was only a few years after his amputation that Jason was able to move to wearing a more advanced legs with a computerised knee unit that allows him even more mobility and abilities.

“I also have an amazing carbon fibre running blade that has allowed me to ‘run like the wind’ and train for the 100m sprint and run a personal best of 17 seconds in the Brisbane Nationals in 2015,” explained Jason. Jason enthused that “the advances in prosthetics have been amazing to witness over the years and I’m so glad to see children and adults now being able to access much more functional and comfortable prostheses”.

Since first meeting Andrew Vearing, Jason always thought his eventual career would be as a qualified Australian Prosthetist. Jason was recently accepted into the Masters of Prosthetics and Orthotics program at La Trobe University (Melbourne) and will commence his studies in 2017. “I am thrilled that I will be able to achieve my ultimate career goal and be able to work as a clinician supporting child and adult amputees. I really hope that the academic studies, practical experience and my own personal experience will assist me to become a well-respected and patient-centred Prosthetist in the future,” said Jason.

Speaking from personal experience Jason believes that “specialised support and information is fundamental for children with limb differences and their families, as support plays a major part in accepting, learning and growing to live with a limb difference”.

Jason admits to feeling a little isolated when he was a teenager, but now realises that some of his school peers were nervous talking about his amputation because they were worried they would upset him. “It was only later that I discovered that it was my responsibility to take the initiative to approach others and make them feel comfortable with the fact that I had a limb difference because, after that, then the barrier was down for all of us,” explained Jason.

For these reasons Jason recently launched his own YouTube Channel and Facebook Page called ‘Limb Evolution’, a visual representation of his own progresses and new abilities­­­. Jason shares his story and passion for prosthetics through videos commencing with him taking his first steps with the aid of a prosthesis, to his thirteen years of experience as a Prosthetics Technician. Jason established these pages as he felt that many people with limb differences might benefit practically, physically and morally from seeing his journey and witness just what a person with limb difference can be or do. To subscribe to his channels and receive updates on his latest videos, just type ‘Limb Evolution’ in YouTube and subscribe or like his Facebook Page.

Jason’s final advice to children and young people living with any type of limb difference is the motto that he lives by. “Follow your dreams and believe in your vision, believe in you and seek support, support people around you, never give up, and use your limb difference as a strength, not a weakness”.

Limbs 4 Life thanks Jason for sharing his story and for being one of our very committed Peer Support Volunteers. Limbs 4 Life also wishes Jason all the best with his upcoming studies and looks forward to working alongside him as an industry peer.

We also thank The West Australian newspaper for kindly providing the photo of Jason prepared for rowing in ‘Head of the River.

Don’t try this at home!

Chris AndersonThe catch-cry of many television programs featuring stunts often start with a warning “don’t try this at home”.  But have you ever wondered what a professional stunt person actually does and why this warning is very important for children and adults alike?  We were lucky to meet with Chris Anderson – professional stuntman, amputee and long-term Peer Support Volunteer with Limbs 4 Life – to find out more.

Chris has worked in the television and film industry for close to 40 years as a stunt professional; working in many adult and children’s productions (as well as advertisements) that would be familiar to many readers of all ages.  For many years Chris performed at a stunt man; designing and performing the actual physical acts as well as acting as a ‘body double’ for actors.  In more recent years Chris has scaled back his physical stunt performances, and predominately works as a Stunt Coordinator designing stunts, training young stunt professionals and ensuring that stunts are hazard and risk free to all members of the cast and crew.

Having worked in the industry for decades, Chris’s resume lists hundreds of productions he has worked on; work that has enabled him to work alongside some of Australia and the world’s well recognised actors and directors.

Most recently Chris has worked on the very popular Australian children’s television show and film ‘Nowhere Boys’.  Chris has also worked on other popular Australian children’s shows and films such as ‘H2O – Just add Water’, ‘Ocean Girl’, ‘Round the Twist’, ‘Flipper’, ‘Don’t be Afraid of the Dark’, ‘Tomorrow when the War Began’ and ‘Neighbours’.  Older readers might also be interested to learn that Chris has worked on films such as ‘The Dressmaker’, ‘Mad Max’, ‘Moby Dick’ and ‘Pitch Black’, as well as local television shows such as ‘Glitch’, ‘The Slap’, ‘The Flying Doctors’, ‘The Sullivans’ and ‘The Paul Hogan Show’ to name but a mere few.

Chris has worked with an array of local and international actors; performing stunts for them, designing stunts that other stunt professionals perform or training actors to perform stunts themselves.  Patrick Stewart, Vin Diesel, Jack Thompson, Kate Winslet, Liam Hemsworth, Rebecca Gibney and Paul Hogan are just a tiny list of the actors that Chris has worked alongside over the years.

Equally lengthy is the array of stunts that Chris has designed or performed over the years; ranging from those related to fire, jumps, car driving and underwater diving.  It comes as no surprise that, given the risky nature of stunts, Chris works to ensure that any stunts are performed with the safety of all cast and crew in mind.  “It’s all about ensuring that everyone involved are safe and that injuries won’t occur, and when I coordinate stunts I make sure that the actor or stunt person is trained to complete the stunt hazard-free,” explained Chris.  “When child actors are involved in stunts there are very strict rules and regulations in place to ensure that these young people are safe, and sometimes we just won’t allow them to perform a stunt,” emphasised Chris.

Chris had his right leg amputated below the knee as a result of a work-related sailing accident in 1991.  “The loss of my leg was a workplace accident, and really shows why safety in the industry is paramount,” stated Chris.  Since Chris’s accident 25 years ago, occupational health and safety and changes in the industry have led to a significant reduction in stunt-related accidents on productions.  The introduction of computer generated imagery also means that some of the stunts that, in previous years, would have to be performed ‘live’ can now been created in a design studio.  However, as Chris explained, there is still a need for ‘real life’ action that can only be completed by highly skilled male and female stunt professionals.

Not long after his amputation, Chris returned to work as a stunt man.  “I was in my early 30s and I really wanted to get back into work after losing my leg.  I knew I could do it, but it would just require some adjustments, and it wasn’t long before I was back doing live action stunts again,” outlined Chris.

Chris grew up on a farm near Echuca, in regional Victoria.  “Living in the country allowed me to expend all of my energy and assist my Dad by working on the farm, and I think being a ‘high-energy’ kid certainly influenced by decision to become a stunt performer in my early 20s,” related Chris.

Coincidentally, Chris’s father also lost a limb due to a traumatic accident on the family farm.  “My dad lost his arm when I was two, so I don’t remember the accident, and I have lived my whole life knowing my Dad as an upper limb amputee.  I also grew up in contact with other amputees who lived in our local community, which certainly helped me to adjust when I lost my leg in the accident,” recounted Chris.  Limb differences were thus a feature of Chris’s life and treated in a positive manner by family members and friends.

However, when Chris lost his leg he felt that there was little support available to him in metropolitan Melbourne.  “I met some amputees in hospital and the rehabilitation centre, but once I went home there wasn’t any local groups I could connect with or call upon for support,” said Chris.  “It was fantastic to learn about Limbs 4 Life many years ago, and see that people with limb differences now had an organisation and community to call their own.  I felt that, as someone who has lived as a lower-leg amputee, I could assist others so I decided to become a trained Limbs 4 Life Peer Support Volunteer about five years ago,” explained Chris.

Chris is a very dedicated and respected member of the Limbs 4 Life Peer Support Volunteer team, which now includes over 120 people across Australia.  Peer Support Volunteers, who have lost limbs during their adulthood, assist others by visiting people pre or post a recent amputation in hospital or rehabilitation facilities.  “I really get a lot out of being a Peer Support Volunteer, as I can visit people and answer the everyday questions they might have and hopefully play a role in assisting them to adjust to their new circumstance.  I think I’ve made around 50 peer support visits over the years, as well as group meetings, and I can’t imagine ever stopping as I think it’s so important,” shared Chris.

Chris also welcomes questions from members of the community when they notice that he wears a prosthesis, as it’s a chance to give correct information and build positive awareness of limb difference.  As a professional stunt coordinator, who has worked on many children’s productions, Chris is also asked about his limb difference by the child actors he works alongside with.

Chris said that children’s most frequent question is “what happened to your leg?” when they notice he is wearing a prosthesis.  “The way I respond depends on the age of the child, but I generally explain that I had an accident and as a result the doctors had to remove my leg and now I have a new leg,” said Chris.  “I find that children are just so accepting and, given that many of the books and films they now enjoy feature robots, some are particularly thrilled as they think they have just met a ‘real life’ cyborg,” laughed Chris.

Chris is the proud father of Adam, his thirty-year old son, and Cassidy, his twenty-seven year old daughter.  Chris has also been happily married, for nearly forty years, to his wife Anne, a very well respected Sculptor. “I have a great life with an amazing and supportive family, and I’m also lucky to work in an industry that I love.  What more could I ask for!,” enthused Chris.

Limbs 4 Life thanks Chris for taking the time to be interviewed and sharing his personal and professional story with us.  We also want to thank Chris for the many hundreds of hours that Chris has volunteered to Limbs 4 Life over the years, and look forward to calling upon his peer support skills for many years to come.  Make sure to look out for Chris’ name in rolling television and film credits!

Kylie grew up with ‘No Limb-its’

kylieKylie Franson is a very busy woman who holds many varied and important roles.  Kylie is the mother of two young boys, Jacob and Mitchell, and is married to Kyle.  Kylie also runs her own business ‘No Limb-its’ and is the founder of the South Australian charity ‘Kidney Kids SA’.

Kylie, who is 33 years old, was also born with a congenital upper limb difference.  “I was born missing my left forearm, and to this date I don’t know what caused my difference,” Kylie explained.

Reflecting on her childhood, Kylie feels that her limb difference didn’t present many difficulties while growing up.  Although in adulthood Kylie has had some corrective surgery, to improve elbow joint movement, and thinks that not using a functional prosthetic arm may have contributed to some more recent physical difficulties.

“The prosthetics available in the 1980s were not as advanced as they are today, so I was initially fitted with a heavy arm with a ‘metal hook’ hand when I was 10 months old.  I never really took to it, had falls and consequently I would rarely wear it.  If I was a child today, with the better options now available, I think I would have persevered with a prosthetic arm,” Kylie said.  At the age of 10 Kylie was fitted with a cosmetic arm (cosmesis), with no functionality and a primary purpose of ‘filling out’ clothing.  Kylie didn’t wear her cosmetic arm for very long as, like the functional prosthetic arm, she found it “got in the way of things and I operated better without it”.

As an adult, however, Kylie has started to experience some back issues that she attributes to not wearing a prosthetic arm. “I overused my residual limb and have put excessive force on parts of my back because of not wearing a prosthesis.  As a result, I can’t perform some everyday tasks, such as vacuuming, without pain.  I wish that I had persevered with a prosthesis when I was a child, or that today’s ones were available then, as I’ve not been able to adjust and wear one as an adult,” Kylie explained.

Born in Adelaide, Kylie moved to the small country town Wallaroo when she was a child and stayed there until recent years. Prior to moving to Wallaroo, in Grade 6, Kylie’s Mum contacted the school so that staff and students could be prepared about her limb difference.  “My Mum did the right thing letting the school know that I was missing my arm, but as no one had met or encountered an amputee previously they didn’t know what to expect.  Maybe they thought a green monster was coming to school, so it came as a shock when I arrived and the students just started saying ‘nice to meet you, but you’re normal and we thought you’d be different’,” Kylie recounted.  Naturally fellow students asked questions about why Kylie’s arm was missing, to which she responded “I was born this way” and with curiosity sated the matter was no longer discussed.  Kylie was, well, just ‘the new kid at school’.

Over the course of her childhood Kylie did come across a handful of negative comments regarding her limb difference.  “In primary school I wanted to do calisthenics and when I joined the group we all had to get in a circle and join hands.  Well, the poor girl next to me freaked out that she would have to hold hands with someone without one. While it was a little distressing at the time it was one of those experiences that helped me to build resilience, so I treat it as a positive experience,” Kylie said.

Kylie recognises that “you can’t stop the way people feel but you can change the way you respond to people who are inappropriate, and it’s useful to use humour and information as influential tools when it occurs”.

Kylie’s family didn’t treat her any differently to her younger brother and supported her to be “open, honest and assertive” and she was reluctant to let her parents interfere when she encountered any trying situations.  Kylie feels that this played a significant role in her building personal resilience and self-confidence.

Kylie’s open approach to discussing her limb difference, along with a desire to positively educate others, led to her conducting presentations at her sons’ primary school in recent years.  “I realised that teachers and students were wondering why I had a missing arm and what it’s like to live life without use of two arms, so I asked the school whether it would be useful to make student presentations,” Kylie said.  Over the last few years Kylie has conducted many information sessions to students. Kylie outlined that “it has helped my sons who have not had to repeat the same story about their Mum each year, and it has also allowed me to educate students about limb difference, as well as have great fun talking to curious children”.

After receiving positive feedback from educators and a push from them to conduct similar presentations in other schools, Kylie developed her business ‘No Limb-its’ during 2015.  Kylie has structured her presentations, with the assistance of her step-mother and best friend who are both teachers, so that they align with the National Curriculum for Education requirements in ‘health and physical education’ and ‘civics and citizenship’ at both primary and secondary levels.  Kylie uses these presentations to share her life experiences, brings props (upper and lower-limb prosthetics and adapted assistive devices), and discusses what it’s like to live with a physical disability.  More importantly, Kylie’s key focus and message is that being a person with a limb difference presents ‘No Limb-its’ to her.

Kylie’s presentations are age-appropriate and suited to the curriculum being studied by the students.  The most frequent question posed by students is “why don’t you have an arm?”  For older students the response is generally a detailed explanation, along with medical information, about the common causes of limb differences.  For younger students the most appropriate and acceptable answer is generally “I came out of my Mum’s tummy with only one arm”.

Many students, and particularly those in secondary school, “want to talk about my personal experiences and disability more generally as it is something they are becoming more aware of and relates to their studies”.  Consequently Kylie has developed a program that incorporates information about health and wellbeing, ethics, equality, respect, fairness and establishing positive social skills when supporting members of the community who live with disability.

Kylie has a growing bank of hilarious questions and responses to her presentations, particularly during encounters with young children.

One eight-year old girl asked a question both funny and borne out of serious concern.  “At the conclusion of my talk, this little girl asked me whether my Mum had been to a doctor recently to have an x-ray to make sure that my arm wasn’t still stuck in her tummy.  She was genuinely worried about my Mum, but I was able to allay her fears by further explaining that my arm didn’t grow so it hadn’t ‘been left behind’ inside my Mum,” Kylie laughed.

Another student approached Kylie at the end of the school day, presenting her with a cut-to-size ‘hand’ made out of blue paper. Kylie recalled that this girl said “I know you have that arm thing going on – so here’s a hand for you, I hope it helps”. Kylie is amazed by the honesty, empathy and understanding of all the students she has encountered, and hopes that they go home to share their learnings and build positive awareness of limb difference and disability with their families.

Kylie’s experience with disability extends to her immediate family also; with her oldest son Mitchell living with Autism and younger son Jacob living with kidney disease.

Jacob was born with a chronic kidney disease which requires ongoing assessment and treatments.  This experience and meeting families in a similar situation led Kylie to establish the ‘Kidney Kids SA’ charity in 2012.  “During Jacob’s early life we were living in regional South Australia and travelling over 300kms roundtrip on a regular basis to attend the paediatric hospital renal clinic in Adelaide.  I saw first-hand how hard it is for rural families who sometimes have to leave home and spend weeks or months at a time in Adelaide.  It is a draining and expensive experience for these families, with little financial and other assistance available to them,” Kylie explained.

Kylie, along with some friends, decided that something could be done to support families in these circumstances. “We launched Kidney Kids SA so that families in South Australia could apply for financial assistance.  We are a volunteer-only run organisation that fundraises and attracts sponsorship to support the families of children with kidney disease,” Kylie stated.  Kidney Kids provides families with travel assistance, accommodation funding, hospital meal vouchers and other support to make their stay in hospital more comfortable and less stressful.  “I can’t thank our Committee Members, volunteers and sponsors enough for making Kidney Kids a reality.  It’s hard enough having a sick child, but when you also have financial concerns the situation can be overwhelming.  So, it’s great we can play a small part in making things a little easier for Kidney Kids families,” Kylie emphasised.

Kylie has recently began using the National Disability Insurance Scheme (NDIS) to obtain support for Mitchell.  “As a new program it hasn’t been without some issues, but it’s improving as the NDIS becomes more settled and stabilised,” Kylie said.  “The biggest learning I have had, and would say to any parent, is make sure you are prepared to advocate for your child and be across what his or her current and future needs might be.  I would also suggest that you use the skills of allied healthcare professionals that you respect.  These professionals will be of enormous assistance when it comes to planning, advocacy, helping you to navigate the system and completing the reports that NDIS require,” Kylie highlighted.  Having looked over the ‘Limbs 4 Kids NDIS Parent Checklist’, Kylie thinks this will be a valuable tool for parents of children with limb difference preparing to enter into the scheme.

Kylie is a keen advocate for Limbs 4 Life and our Limbs 4 Kids program, and has been formally trained as a Peer Support Volunteer. “Until I came across Limbs 4 Life many years ago, I didn’t know of any specific support for amputees in Australia.  But since then I feel like I have joined a community where people can connect and share experiences,” Kylie stated.

“I’m also really passionate about the Limbs 4 Kids program, and want to be able to support families to feel less worried about their child’s future and show them a ‘normal, everyday Mum’ who has had a limb difference since birth,” Kylie expressed.

In drawing upon her personal and professional experiences, Kylie wanted to share some thoughts and tips with readers.  Kylie wanted readers to remember that children are curious, may not have met someone with limb difference, and thus sometimes say inappropriate things. Kylie highlighted that “generally this is because of a lack of understanding, rather than a desire to hurt your child’s feelings”.

Kylie also suggested that it is a good idea for children to prepare their own limb difference story, but ensure that their other interests or skills form part of that narrative “as that way their limb difference doesn’t become the key focus of their identity”.

Limbs 4 Life thanks Kylie for taking the time to be interviewed and sharing her story in Thrive. 

If you are interested in learning more about ‘No Limb-its’ visit – nolimb-its.com

If you are interested in Kidney Kids SA, need support or would like to donate visit – www.facebook.com/KidneyKidsSAInc/

Going toe-to-toe with Ben Brizzi

Ben Brizzi 1Ben Brizzi was born with a congenital lower limb difference which resulted in an amputation when he was toddler.  Now in his early 40s, Ben has seen significant changes in technology and support for people with limb differences over that time.  Ben’s limb difference has never held him back from pursuing sports, volunteering in the community, entering into a professional career in telecommunications and being a passionate advocate for children with limb differences.

Ben was born and raised in Melbourne, in Preston to be precise, and has lived in that suburb his whole life.  Ben has an identical twin brother, who wasn’t born with congenital limb differences, and grew up in a family with an Italian father and Australian mother. In addition, Ben has an older brother and younger sister.

Ben was born in 1972 with an unformed tibia and heel bone, a condition which resulted in his right lower leg amputated when he was 14 months old.  “I consider the impacts of my leg amputation to be quite small and, as I don’t remember that time in my life, my family say that I really ‘took off’ in terms of walking after I had the surgery,” said Ben.

Ben has witnessed significant changes in prosthetic technology between when he was a child and what is available today.  “When I was young my prosthetic leg was an old style where chords, cased in plastic, allowed the leg to move and leather was strapped from my waist and then around my right thigh to keep the leg in place,” explained Ben.  “While my original prosthetic leg, compared to what child and adult amputees are fitted with today, might have seemed very cumbersome I don’t remember complaining.  It was just the way it was and it was part of me!  I could run, walk and play and I never felt that I was missing out on anything; something that was very beneficial growing up as a twin in a competitive environment!” stated Ben.

In comparing the prosthetic leg he used as a child with the one he now uses, Ben said “the changes are so remarkable and different, it really does blow you away”.  Ben now uses a Total Surface Bearing (TSB) socket and Freedom Foot, which he finds comfortable for both general and active mobility, and also recalls being “so excited when the rubber foot casts were first moulding ‘veins’ on the prosthetic foot”.

Although Ben was aware that his prosthesis meant he was a little slower than others when he was a child, it never stopped him from trying sports.  “From the age of five I competed in Little Athletics in summer and football in the winter, and I was also introduced to the now defunct Amputee Athletics Victoria after my Dad spoke to an older amputee,” recalled Ben.  Competing in the Australian Amputee Championships at the age of eleven, Ben won two gold medals (200 metres and 400 meters) and two silver medals (100 meters and long jump) and was “stoked by receiving the really heavy medals”.

Ben feels that having a limb difference hasn’t really held him back from anything, that he’s had great life experiences and has a great support network of family, friends and colleagues.  “The only I thing I couldn’t do, and still can’t, is long distance running.  I found that running more than 800 metres would result in blisters on my stump and, while I tried stockings and ointments, lengthy runs just weren’t for me.  Instead it allowed me to focus on other sports and shorter distance competitive running, so it really wasn’t a problem,” shared Ben.

Ben was born into a family with strong connections to the sport of boxing.  “In 1968 my father and uncle established the ‘Brizzi Bros Boxing Gym’ in Melbourne and have had some great success training amateur and professional boxers over the years.  So naturally, my twin brother and I learned how to box.  We participated in some amateur bouts but due to having enlarged spleens we couldn’t continue,” said Ben.

Ben Brizzi 2While Ben concedes he is biased he does believe that his Dad is one of the best boxing trainers in Australia; something backed up by the fact that their family gym has been successfully operating for almost 50 years.  Ben is now a part-time boxing trainer himself, and feels lucky to have been able to learn under his Dad’s guidance and develop “great coaching methods and techniques”.  Indeed Ben recommends boxing as a good fitness sport that can cater to individual needs and abilities.  “Boxing can accommodate people regardless of whether they are sitting or standing, and I’ve trained people who use wheelchairs.  At the end of the day the most important thing is that the person is comfortable, confident and hopefully exhilarated after a session,” Ben explained.

In thinking about his family, and the support he has had from them throughout his life, “they are awesome” is the way Ben sums them up.  “Even though I had a limb difference, and a twin brother as a point of comparison, I was never treated any differently apart from the obvious times where I may have needed help. I was never talked about or spoken to any differently by immediate or extended family members.  My leg was just part of who I, Ben Junior, was,” recounted Ben.

Ben concedes that things did get a little bit harder for him as he entered adolescence; a time when he felt more self-conscious about his limb difference.  It was also the first time that other young people giggled or stared at his limb difference and consequently his “self-confidence took a bit of a hit”.  Ben admits to getting into a “few scraps as a boy” but when taunts about his leg arose he used to think to himself “Is this the only angle they’ve got?  They have to mention my leg to get a rise out of me?”  “Once I thought of it that way I felt more confident and started to think it was them that had the problem and not me,” said Ben.

As an adult Ben has had great support from his employer, the Victorian Telecommunications Ombudsman.  Getting older has seen Ben develop cysts in his stump from time to time, and has nothing but praise for the understanding that he has received from his workplace when this occurs.  “My colleagues and the Human Resources Department always check if I am OK, ask if there is anything they can do to assist and are quite comfortable with me taking my leg off anytime I need to,” said Ben.

Ben often wears shorts, thus exposing his prosthetic leg, which naturally leads some people in the community to ask why he has a missing limb; a question that Ben is more than happy to respond to.  “I usually say that when I was born I had no bone here, at which point I point to my shin, and then say I also didn’t have a bone here, and then point to my heel and ankle.  Once I’ve pointed those differences out, I then tell the person that because of those conditions the doctor removed part of my leg so I could walk properly,” explained Ben.  Ben feels it important to respond to questions about limb difference “so that people, who may never have met an amputee previously, learn about amputees in a positive and educative way”.

Ben finds the growth in online and organisational support for amputees in recent years to be “absolutely phenomenal and important”.  Support, exposure and the reduction in community stigma related to amputees are significant positive changes that Ben has witnessed increasing since his own childhood.  “While there was some community support when I was a child, the growth of organisations like Limbs 4 Life and the Limbs 4 Kids program has increased support tenfold,” said Ben.  Ben feels that the Limbs 4 Kids program “is great for providing a network for kids and families who can now reach out for any advice or help they may need; a support that is invaluable and can’t be measured”.

Ben also feels that the increase in support organisations is also helping professionals working in the amputee field as “you can speak to your prosthetist or clinic and they can put you in touch with someone who can assist you in any way you need”.

Ben recently undertook the inaugural Limbs 4 Kids ‘Parent Peer Support Volunteer’ training via webinar; training that is open to parents of children with limb differences or adults who, like Ben, grew up with a limb difference.  While Ben already volunteers his time to Boxing Victoria, Boxing Australia and Future Stars Cricket Academy he was keen to become a Limbs 4 Kids volunteer as he “wants to give something back, share his story with others and show people that having a limb difference can actually open up doors that you never thought were possible”.

Ben recognises that everyone is different in some way, his just happens to be a leg difference.  “I might not have part of my leg, but I really do believe that there are no limits to what people can achieve with the right support,” said Ben.  “I also like to let people know that although I might wear a prosthesis I can dance like a demon,” laughed Ben.

Limbs 4 Life would like to thank Ben for sharing his story in this edition of Thrive, as well as congratulate him on becoming a new Peer Support Volunteer with the organisation!

Ben Swain, from lawyer to Australian Cycling Champion

Ben Swain Photo 1Ben Swain is a man of many personal and professional successes.  Ben was also born with congenital limb differences affecting his hands and one foot.  In this article Ben shares with us his story of living life with limb differences highlighting that, while this has brought some challenges, it has not marred his ability to achieve career and sporting successes.

Ben is 36, resides in Newcastle in New South Wales and combines a busy workload as both a lawyer and an award-winning para-cyclist.  Ben was also born with a congenital limb difference.

“I was born with Split Hand and Foot Malformation, a genetic disorder that is characterised by the complete or partial absence of fingers or toes.  I have a thumb and forefinger on my left hand and my right arm is malformed from the elbow. I was also born with a malformed left foot”, explained Ben.  Ben underwent corrective surgery during his childhood aimed at mitigating the impacts of his limb differences and enhancing his physical abilities.  “When I was about two years old I had an operation to remove a toe and to close the cleft on my left foot so I could wear a shoe.  I also had some tendons released in my left hand,” said Ben.

Presently, Ben and his family are trying to identify the gene that has caused his limb differences with the help of researchers at the Greenwood Genetic Centre in the United States of America.

“We understand that genetic researchers have identified four of the seven different types of genes that cause Split Hand and Foot Malformation.  Unfortunately, the gene causing the limb differences in my family has not yet been identified.  We don’t know what has caused it, other than that the gene first presented with my father.  My brother does not have any limb difference and has two young children that are identical twins.  What is especially remarkable is that despite being genetically identical, one of the twins was born with a limb difference of his left arm (ulnar longitudinal deficiency) that is very similar to my right arm, whilst the other twin does not have any limb difference.  This shows the complexity of research into genes and “gene expression”.  The research team at the Greenwood Genetics Centre are doing fantastic research into Split Hand and Foot Malformation and we are extremely grateful for this.”

As a child Ben didn’t wear a prosthesis, was encouraged to try everything and learn to make personal adaptations that would facilitate social and physical participation.  As Ben expressed, “I grew up on a farm with my brother. Our parents did the best thing for me by treating us both the same way.  I did everything my brother did and was brought up to believe that anything is possible if you want to do it”.

Ben highlighted that “it wasn’t always easy when I was growing up” but he utilised resources and adopted new approaches that accommodated his limb differences.  “When I was young I did use some assistive devices, including electronic scissors which all my school friends wanted to use,” recounted Ben.  “But overall I achieved most things with just a little bit of determination and sometimes developing my own way of doing things, like how to tie shoe laces or serve one-handed when playing tennis”, shared Ben.

In reflecting on both his childhood and adulthood, the response of others to Ben’s limb difference has generally been positive. Although Ben has also experienced the occasional undesirable response, he has a philosophical and pragmatic approach in these situations.

“Growing up I have learned that people always remember you when you have a limb difference.  The majority of people have responded positively to my disability.  I have always been a confident person, which I believe has really helped when meeting new people, as my disability is only a very small part of who I am and does not define me.  Unfortunately there will always be some people who make inappropriate comments, however these people aren’t perfect themselves and are different in their own way.  Changing the topic or putting the focus back on them usually helps to address any inappropriate or negative remarks,” shared Ben.

At the age of 16, after attending the family solicitor with his family, Ben realised that he wanted to be a lawyer.  Ben’s pathway into this field saw him combine both full-time work with tertiary studies and relocate from the country to Sydney to pursue these opportunities.

“Once I finished school I commenced working in a law firm in Sydney.  For almost ten years I worked as a paralegal whilst I completed a Bachelor of Business and Bachelor of Laws at the University of Technology Sydney.  Since being admitted as a lawyer in 2007, I have specialised in planning, environmental, and local government law,” said Ben.

Ben’s studies and professional work have assisted him in developing new abilities and ways of overcoming any challenges that present.  “I taught myself to type through university, and whilst I type with two fingers and my elbow, I am quite quick!” laughed Ben.  When there is a lot of typing Ben’s “wonderful secretary” assists him by typing his dictations.

Ben acknowledges that his limb difference has limited him from pursuing some goals, but in other ways it has opened up new opportunities.  “You know, I thought that I might like to learn to fly a helicopter and when I was young I was interested in becoming a doctor but I didn’t feel these suited my abilities so have chosen a legal career path that both suits my abilities and is something I really enjoy,” said Ben.  Equally, Ben was quick to say that “I’m sure it wouldn’t be impossible to fly a helicopter or become a doctor and one day I might end up giving these a go too”.

Sport featured prominently in Ben’s childhood and while he thought he couldn’t pursue some of these sports competitively when young he is now doing just the opposite.  More than that, Ben is actually now an Australian Champion para-cyclist.

“I used to ride a mountain bike as a child with my brother who also raced road bikes, but because of my disability I couldn’t handle the mechanical gearing on a road bike or the brakes.  Although I always wanted to race road bikes, I instead played competitive tennis for 10 years throughout my schooling years,” explained Ben.

In recent years, however, the opportunity to pursue the goal of competitive road cycling has emerged for Ben.  “About two years ago I attended a Talent Search Day with the Australian Paralympic Committee (APC) and was told that only wheelchair tennis was offered at the Paralympics however I had the physical attributes to compete in cycling.  Shortly after the Talent Search Day I met Paralympian Pete Brooks from the APC on a ‘Try the Track Day’ at Dunc Gray Velodrome in Sydney who helped me with my training and modifications to my road bike.  Since then I’ve been racing with the Hunter District Cycling Club and training with the Hunter Academy of Sport and my track coach Glenn Lewis,” explained Ben.

In a short period of competitive track and road cycling Ben has shown himself to be an outstanding competitor.  During the last year alone, Ben has won numerous cycling medals.  At the 2015 National Para-cycling Track Championships (C4), Ben won the Gold Medal in the 4km Pursuit and the Silver Medal in the 1km Individual Time Trial.  At the 2015 Union Cycliste Internationale (UCI) Para-Cycling (C1) Road Event, Ben won Bronze Medals in the 24km Time Trial and 72km road race.  At the 2015 National Para-cycling Road Championships (C4), Ben set a new Personal Best in the Time Trial with 38.1km per hour average over 24km taking out the Bronze Medal, and also won the Silver Medal in the 72km road race.

With a raft of Australian medals under his belt, Ben said that he is “now training for the track season at the end of the year with the goal of competing overseas, such as a World Cup or World Championships”.  Ultimately, Ben hopes to make it to a Paralympics and has his “eye on making it to Japan in 2020”.

Ben is passionate about para-cycling as “it’s an awesome sport with various classifications for different disabilities.  It’s also extremely competitive world-wide with pro-cycling teams now sponsoring para-cyclists”, explained Ben.

Having had a limb difference for 36 years, Ben has witnessed significant positive changes in the community, social and sporting support available to children with disabilities and families over that time.  “Even sporting bodies such as the Australian Paralympic Committee provide services that weren’t offered when I was a child.  I’d strongly recommend getting children involved in Paralympic sports, which can provide a sporting network of friends with similar experiences and disabilities”, Ben advocated.

Ben is pleased that the Limbs 4 Kids program has now been established and hopes that it, and his own story, can assist children and young people with limb differences to pursue their goals in life.  “While limb difference can present some challenges, it is important to remember that is only a small part of who you are.  Having a limb difference can also make you more aware of your natural abilities and open up opportunities that you may not have had otherwise,” enthused Ben.

Limbs 4 Life would like to thank Ben for taking the time to share his story and wishes him all the best with his professional and sporting careers.  Indeed, we all hope to see Ben as a member of the Australian Paralympic team in 2020!

Living, playing and working with prosthetics

Shane LukeIn 1987 at the age of 15 years, Shane developed Osteogenic Sarcoma (bone cancer) which resulted in an above-knee amputation of his right leg.  Shane endured a total twelve months of chemotherapy as in-patient at the Prince of Wales Children’s Hospital in Sydney.  “It was a really tough time for my parents, who supported me through the loss of my leg and the debilitating effects of very strong doses of chemotherapy. I look back now, as a parent, and am even more appreciative at how they coped and maintained such a positive attitude throughout my treatment and rehabilitation”, said Shane.  Fortunately Shane overcame his cancer and has lived as an amputee for almost 30 years.

Family features prominently in Shane’s life.  Shane has been married to his beautiful wife Helen for 12 years and is the proud father of Jason and step-daughter Scarlett, both aged 19 years.  Shane said that “I don’t have any siblings, so can’t share any funny anecdotes about sibling rivalry.  But what I can say is that my parents have been incredible supports throughout my life.  When I became an amputee they encouraged me to ‘get on with life’ again.  Which is exactly what I did.  I’ve just got on with life”.  For Shane, life encompasses family, career and golf.

Shane has had two distinctly different careers during his life.  “I entered into the printing industry as a graphic designer. I worked in that sector for 17 years but I felt I needed a change.  I was really fortunate to be offered a position at Ottobock and I’ve been working there for ten years now,” stated Shane.  As an Orthobionic Service Technician at Ottobock Shane manages the local service and repairs and coordinates the high tech componentry with Ottobbock’s German Headquarters.  Shane also assists Australian Prosthetists through the provision of information, support with Ottobock academy and training.

As an amputee, and someone who works in the industry, Shane has seen enormous advances in prosthetic technology over the years.  “The first leg I received had a pelvic band, I then moved to one with a suction socket and now use one with a silicon liner”, recalled Shane.  In thinking about his first prosthetic leg, Shane felt it “was uncomfortable and the government funded componentry limited my mobility enormously – I was 15, I loved sport and the leg couldn’t keep up with what I wanted to do.  Whereas today’s legs enable people to be more active and, if fitted correctly, shouldn’t cause too much pain or discomfort”.  Working within the prosthetic industry means that Shane is seeing the positive results of significant research and development on almost a daily basis.  Shane enthused that “Each new product is better than the last, which means better outcomes for us as amputee users.  I’m very excited that we are moving from mechanical to orthobionic prosthetics, and the emerging use of nerve stimulus for upper limb amputees is just incredible”.

As someone who lost his leg as a young person, Shane is particularly pleased that children with congenital or acquired limb differences are entering into a period of technological change within the industry. Shane hopes the government funding can keep up with the never ending advances in prosthetics. “It is so important that child amputees are given access to prosthetic limbs that will enable them to participate fully in our society – something that wasn’t as easy for me when I was a teenager because of the cumbersome leg I was fitted with”, asserted Shane.

Shane is a world-class golfer who has represented Australia in many disability and amputee-specific golf tournaments.  For Shane, golf is more than just a sport.  Golf is his passion, his meditation and his exercise.  Shane actually started playing golf, with his father, prior to the amputation of his leg.  “Golf became my rehabilitation after I lost my leg and whilst still on chemotherapy. I was at home, feeling a bit stronger than in my earlier stages of my chemotherapy and I was pretty bored.  So, Dad suggested that we go to the golf range and hit some balls.  Well, I nearly laughed at him when he said that as I was still only using crutches and couldn’t imagine that I would ever be able to hit a ball again, let alone with only one leg,” said Shane.  Visiting the golf range was an eye opener for Shane who successfully did hit a ball, in fact many balls, that day and never fell over once.  “When my chemotherapy finally finished I had my Dad take me to the local golf course where he caddied for me and I walked a few holes on crutches while dropping them to hit the golf ball standing on one leg. Gradually over time I gained enough strength to walk and complete 18 holes of golf,” explained Shane.  As a teenager adjusting to life as an amputee, golf gave Shane something to look forward to and he enjoyed working towards improving his golf handicap score.  “I really can’t thank Dad enough for his support and encouraging me to go to the golf driving range for the first time,” said Shane.

Shane was part of the Australian team that won the ‘World Disabled Cup’ in South Africa in 2014 and was part of the Australian team that placed third in the ‘World Disabled Championship’ in Japan last year.  2014 was a very successful year for Shane as he placed an individual second place at the ‘World Disabled Championship’ in Japan. Shane also won the ‘Australian Amputee Open’ earlier this year for his 6th national title. Shane is a member of Bankstown Golf Club, a group one golf course in Sydney.  He is very competitive with his mates, holding his own against able bodied golfers and playing off a scratch handicap being one of the lowest in the club. Shane also represents Bankstown GC in the Major Pennants where he competes against other elite amateur able bodied golfers. Interestingly, Shane now uses a state of the art prosthetic leg but yet he still finds it easier to remove his prosthesis when hitting a golf ball.  “I take my leg off to play golf as I find my prosthesis impedes on freedom to rotate my hips at high speeds during the shot, allowing me to hit the ball a long way. And yet I have the best of both worlds being able to use my prosthesis for extra balance to putt and chip for the finesse shots on and around the greens.  I’m able to walk the golf course with my leg if required but it does become more of a physical challenge”, explained Shane.  The establishment of a ‘Disabled Professional Golf Association (PGA) Tour’ is Shane’s personal goal and something he would like to be involved in.  “I would love to see our next generation of children with limb differences aspire to being part of an internationally recognised profession and sport; a sport that is not only fun but terrific from friendship, exercise physiology, potential career pathway and peer support perspectives also,” enthused Shane.

Shane is a firm believer in peer support; having benefited from it when he was recovering from his own amputation.  “I was 15, stuck in hospital and I didn’t want to talk to the hospital counsellor.  In fact I didn’t really talk to many people after my surgery as I just wasn’t ready.  That was until a man walked into my room wearing his prosthetic leg.  It was the first time I’d met another amputee and I felt more positive about my future after I spoke to him about his life and he helped me to see that I was going to be OK too,” recalled Shane.  “In my job, and because I am in the amputee community through golf, I already offer informal support but I now want to do it more formally so I’m going to be trained as an official Limbs 4 Life Peer Support Volunteer shortly,” revealed Shane.

The acceptance of disability and greater awareness of amputees is a positive change that Shane has seen over the past few decades.  “Back when I was younger, people used to hide their disability.  Most people with prosthetic legs would hide it under long pants.  There was a sense of embarrassment I guess.  But I was never embarrassed by the fact I only had one leg.  I would show my prosthesis, or I would be on crutches with only one leg and I wouldn’t cover the fact I wore a prosthetic leg cosmetically,” asserted Shane.  Shane feels that society’s attitude has shifted significantly since his childhood and that it’s good we can talk about disability now, no matter the type.

As both an amputee and a member of prosthetic industry Shane believes that much can still be done to ensure that amputees live fulfilling and productive lives.  Shane stressed that “we need the government to invest more funding in prosthetics so that amputees can be fitted with better componentry that gives them the best outcome for their mobility needs and so they can be socially included; with the end result being more amputees in the workforce and contributing to the community”.  “We also need to ensure that all Prosthetists have access to continuing education so that they can remain abreast of new techniques and advancing technology.  It’s critical that Prosthetists are given the time and resources to continue to learn in the field,” emphasised Shane.  “I also feel that, with the support of Limbs 4 Life and the amputee community in Australia, we can make our society even more ‘amputee aware’”, said Shane.

As an ‘experienced amputee’ Shane wants other amputees to “never give up and keep trying”.  Shane believes that amputees must use their voice to ensure they get the right prosthesis, the right treatment and the right support for them and “to not stop asking for what you need”.

Shane would like to his wife Helen and his employer Ottobock for all the time and support with his golf which has allowed him to achieve his goals and to become the best that he can be. “Their support is greatly appreciated,” said Shane.

The greener side of life

josh thornton bowlingI was born with three fingers on my right hand, two fingers on my left hand, no left elbow and a right club foot. Over the years, to me, other things became more noticeable; such as the fact I could never grow a right calf muscle (skinniest right calf in history) and that my left leg was growing faster than my right leg. At one stage the difference was seven centimetres before a major leg lengthening surgery.

I have always had a positive attitude and it never really affected me growing up. My awesome friends and family were very supportive and instilled that positive attitude in me. I’m a sports nut and always have been. I used to love going to footy training with Dad and having a kick, or going to tennis with Mum on a Saturday in the summer months, and playing with friends. I’d say the best thing my family could have ever done was not treat me any differently. Both my Mum and Dad pushed me to be determined and go out and compete with the rest of the kids. They kept telling me there was no reason I couldn’t win.

My friends were quite sports orientated. Every day after school we would end up at my friends families’ properties, where anywhere from four to twelve kids would be playing football, cricket, basketball and other activities until dark. There was a lot of natural talent out in the backyard back in the days; four of the boys ended up on an AFL list and played professionally. I guess the bonus for me was that, whilst my disability affected me to a point, I was still able to go out and compete in sports against my mates and beat most of them! Ha ha!

Between the ages of 11 and 13 I had to have a fair bit of surgery on my right leg. I was experiencing a lot of pain trying to play competitive sports. I noticed kids started getting a lot faster and better than me in sport, and I wasn’t keeping up with everybody – that was probably more frustrating. I missed out on playing in a few things with mates due to the surgery. The school was great though. Whenever I had to have surgery, they would make things easier for me and still have me involved in everything. I never ever felt left out. Although there was a stage where my Year Five teacher had to lock me in the classroom at lunch and recess as I was in the middle of my leg lengthening operation and I was still trying to go out and play footy, with metal frame and pins all through my leg, and got cleaned up by one of the boys!

That’s when I started looking at other sports I could try that weren’t as taxing on my body. I wanted to compete and I wanted to compete highly. So I started to look at sports that weren’t as taxing on my body and that I could be good at. I tried golf first, but with no left elbow and being right handed,

I couldn’t hit the ball with much elevation. So then I tried Lawn Bowls. As my grandfather played, I went with my Pop to try it out and then heard there was a school side team. I decided to try out for the school team and thought that, lawn bowls being an older persons’ sport (so stereotypical and wrong!) and the fact that I had had a couple of goes, I would make the side. I didn’t and that was the driving factor for me to keep playing and improve to make the school side the next year.

After three years of being involved in the game I started to improve and that’s when my hard work started to pay off. My achievements included: Victorian Under 19’s Singles Championship; representing Victoria at Under 18’s level over 20 times; Runner-up in the Victorian Under 30’s Singles Title; and, 3rd in the Victorian State Pair.

The greener side of life by Josh Thornton

Living with limb differences – a journey from childhood to adulthood

limbs4life 33My name is Gary and I am a person who started life with limb differences. I’m pleased to share my story as I hope it can highlight that ‘being different’ doesn’t stop you from achieving all your goals in life. I also wanted to speak to you about the important role that Limbs 4 Life has played in my life and how excited I am that the Limbs 4 Kids program is going to support all Australian children with limb differences and their families.

I was born in 1962 with a congenital condition called ectrodactyly which resulted in both hand and foot limb deficiencies.  In simple terms it means I was born missing the three middle fingers of my left hand as well as fused bones and missing toes on my left foot.  I had a Syme amputation when I was five at the Royal Children’s Hospital in Melbourne and I also had further revision foot surgeries during my teenage years and as an adult.  I now consider myself to be both a person with a limb difference and an amputee.

Looking back, the Syme amputation that I had as a child changed my whole life.  Prior to the surgery my foot was rotated 75 degrees, had only 3 toes, had fused bones and a malformed calcaneal (heel) bone; making it impossible to walk properly, let alone run. The amputation enabled me to fully participate in the community, in sport and in employment. I wear my prosthesis every day, from the moment I get out of bed until I retire in the evening – I find it very comfortable and very much an extension of “me”. Over the years I have developed a sense of where my foot is in space, almost like a sense of touch. For instance I can tell without looking where my foot is placed on the car accelerator or on the pedal of my bike.  My hand is as it was the day I was born and I can do anything that anyone else can do despite the fact I am missing fingers!

When I was growing up there wasn’t any community support available to amputees.  The only times I ever saw amputees was when I went to the Limb Centre and I never saw or met anyone my age there.  It wasn’t until I was in my early 40s before I actually met and chatted with another amputee. I’m so glad that now all children with limb differences have a chance to meet someone like themself when they are young and, as happened to me, don’t have to wait decades for that to happen.

Growing up as a young amputee, my family didn’t treat me any differently to my other siblings.  My parents allowed me to try new things and were always there to help me along the way.  On the whole, my school friends were fine about my leg and hand – they just treated me like any other kid.  I do remember that there were a couple of kids at school who could be a little nasty at times which did hurt, but I learned how to deal with it.  Joking sometimes helped and when I was young (and even today) I told many jokes or stories to explain my “missing leg”.  “A shark took my foot”, “it was eaten by ants” and “I stepped in a hole and my foot never came out” were probably amongst the most popular stories I shared with peers, adults and strangers.

I’m a sports fanatic and I found that playing sport meant I could compete against my peers and achieve success.  I loved to win, but for me winning wasn’t always about beating the opposition it was about me performing to the best of my ability.  Football was my passion (still is!) and it gave me the opportunity to compete physically.  Football allowed me to gain respect and challenge any negative comments made about my disability. Just because I was “that kid with the wooden leg” didn’t mean that I ever expected any favours. I wanted, and needed, to work for it. The more respect I earned the better I felt about myself and the less different I felt.  They say sport is the great leveller and in my case it couldn’t have been more true. It was only when I got older that I found out a lot of my school and sports friends used me as an inspiration for some of the things they have achieved in life.  I didn’t know that back then and, while I feel proud about the effect I had on them, it does make me feel a little embarrassed saying it publicly!

Being an amputee hasn’t held me back in life at all. I’ve played many sports, been married to my wonderful wife Ruth for decades, have two amazing sons, pursued a variety of careers and I’ve travelled extensively.

As a kid sport was my recreation, my hobby, my social life and my passion. I did cross country running and I played football, hockey and cricket. Later on I discovered a love of squash and played three times a week. I also found that ice skating was great fun and could be found at the South Oakleigh rink most Friday nights through my teenage years. During the summer I spent hours each day on my bike and I also managed to make some money delivering the Sun Newspaper by bike six times a week.

I didn’t really think a lot about relationships until I met Ruth and fell head over heels in love with the most amazing person I have ever met. I was always so busy doing my own thing that I never really had much time to think about relationships and how they might work. The only time I ever felt uneasy about girls was when I was about 15. I went to an all-boys school and attended a social dance with the local all-girls school. It was during a dance that a girl reached out to hold my hand and screamed! It did make me feel uneasy at the time and I’m sure it was difficult for her also as my hand difference was a complete surprise to her. But like all things I got over it and I learned not to hide my limb differences.

Meeting my wife Ruth was the best thing that has ever happened to me. She was never fussed about my leg or hand and was able to see the person inside and taught me to do the same.

I never had to explain my limb differences to my sons.  My kids have grown up with it and to them it’s completely normal. I never had to sit them down and say “ok guys this is what happened”, instead their understanding just evolved over time. My two boys are amazing people.  The only time I have ever had to speak seriously about it with them was in recent years when research revealed that my condition can be passed down. When I told my oldest son that there was a chance his kids could have a limb difference like mine all he said was, “Dad you have done just fine and I’m sure that if my kids had the condition they would do just as well”.

I’ve had a number of different jobs over the course of my life.  My first job was as a metal fabricator producing security door frames.  After that job I worked in retail, with over 17 years of that managing night fill crews in a supermarket.  I always found my employers to be understanding of any needs I might have, but apart from having to take time off now and then to go to medical appointments I never really needed support in the workplace.  If I found difficulty in a task I always tried to find a way around it. At the age of 38 I returned to studies and completed a Diploma in Remedial Massage.  Initially I worked in a busy local clinic but in 2004 I branched out and started my own massage business.  Overall, you could say that a significant amount of my working life has been spent “on my feet” and doing physically demanding tasks!

I’m lucky to have done a fair bit of travelling with my wife and children.  Security gates at airports can be tricky as I set off alarms whenever I go through them, so I always wear shorts that show off my prosthetic leg so that security staff know what is going to happen in advance.

I have two tips when it comes to travelling.  Tip one – always arrive early and wear shorts if you are a leg amputee.  Tip two – on long haul flights DO NOT take the leg off completely unless you have to. One time I travelled to Los Angeles and after having taken my leg off during the flight meant I arrived with a swollen leg and was not able to get my prosthesis back on properly – this resulted in one leg being about 25 centimetres longer than the other so I think I should have been awarded ‘Best Silly Walk of 2003’ for that.  I haven’t had any problems with access to showers when travelling as I’m pretty good at adapting to the different facilities.  But it’s great that more and more hotels are offering rooms with accessible showers.

Limbs 4 Life’s importance differs from person to person; for some it will be support, for others it will be information, and for others it will be social. Or it could be a combination of all of these.  Having had no contact with other amputees growing up I never saw myself as an amputee, I was just “that guy with the artificial leg”. However, since connecting with Limbs 4 Life ten years ago I have become, in my own mind, part of a community.  I am very proud to be able to volunteer my time to support others “like me”. I think having one loud voice from an organisation, rather than many quiet voices, will allow us to create change that will benefit the next generation.  Limbs 4 Life and the new Limbs 4 Kids program has an enormous capacity to do that.

My life motto is that “Life is a series of hurdles. Some you can get over easily, but others might be much harder. When there is no way to go over a hurdle, then you must find a way to go around them. There is always a way”.  If I can offer any advice to children and young people with limb differences I would say don’t try to be what you think the world wants you to be. Instead, be yourself and the world will come to you.

Living with limb differences – a journey from childhood to adulthood by Gary Johnston

Find your mojo

Paul Byer 1My name is Paul Byers. I live in Melbourne with a loving wife and three gorgeous children. I run my own business and consider myself a very privileged person.

I am one of seven children. My six sisters and I were all born in a little country town in Victoria called Numurkah. Dad moved there with Mum to coach football after playing for Essendon in the early 1960s, under John Coleman.

At the age of three I was working on the farm with Dad and put my hand in a wheat auger and lost my left arm. I don’t remember much, mainly what Mum and Dad told me a couple years later.

When I went to stand up for the first time in hospital I fell over. My body didn’t know I had lost an arm.

As a kid I loved sports and the farming life. At the age of five I was driving tractors and trucks around the farm. I played AFL football, cricket, tennis, and swam competitively against my peers. Mum and Dad treated me with heaps of love but no privileges, with the view that I didn’t have a disability. If I went to make ‘an excuse’ about why I dropped a ball playing cricket, Dad was clear that it wasn’t on! He would say, “Find a way! Don’t cop out with that stuff!”  So as a young boy I was challenged by this simple philosophy, but because of this, I don’t feel sorry for myself or buckle to the challenge of a lost limb.

I know people look at me and think ‘he’s only got one arm surely he can’t do that much!’  But deep inside I know I can find a way to do everything and more.  But unfortunately you can’t tell or show everyone what you can do within the brief passing of the hundreds of people you interact with daily.

My story is one of many emotional and physical challenges. Surprisingly enough, the physical was easy and actually fun. You can adapt physically and train yourself to match others and excel beyond. I feel more competent and productive than many abled bodied people. What is the hard part is how to take on the world’s perception of you having lost a limb. Every day I meet individuals that think due to losing a limb I’m not capable of doing what they can. This is the one perception that has driven me since I had the accident. I am driven everyday day to dispel such beliefs. I see this reaction as a positive. If I had two arms maybe I wouldn’t have such a desire to succeed! Maybe I would go through life without really challenging myself and trying to be the best I can be?

So in fact, it has been a blessing to be challenged in such a way. You can identify quality people, who can see through your challenges, to be a big part of your life, as they are challenged in turn as they confront your situation.

Today I keep a balanced lifestyle and play pennant tennis in our local competition which keeps me alive with the enjoyment of competing, and the belief I can win. This is an important part to my makeup, to have a challenge where I can win and achieve respect for myself and from my peers.

I think it is important to realise every person who has lost a limb will have different passions and areas they are good at. Mine is sport, but others will excel in other areas of life maybe academically or through helping the community. It is important you find your passion for excelling in something to nurture your self-respect and to give you confidence in life.

Thanks for taking the time to read my story and good luck with yours.

Find your mojo by Paul Byers

The power of networking

GeoffLike almost 500 others in the UK, I am one of the lucky thalidomide survivors – lucky in the sense that the vast majority of foetuses damaged by the drug either died in the womb or just after birth.

Our story is well-known and I won’t repeat it here.  One of the remarkable things about thalidomide though is its ability to punch above its weight in terms of attracting the attention of the media.  That remains the case today.  But while we were growing up we also attracted the attention of the medical profession – specialist clinics were opened and some of us were forced to wear the rather cumbersome prosthetics of the 1960s and 70s.

As adults, the medical profession seemed quickly to lose interest but the complications of living with our impairments seemed to multiply: using our bodies to do ordinary things in extraordinary ways caused severe wear and tear on muscles and joints – in my case, a prolapsed disc when I was in my mid-thirties which made me rethink my entire approach to my disabilities.

Together with Swedish thalidomide survivors, we cooked up a plan to address the health inequalities that both sets of thalidomiders were experiencing.  The solution was EDRIC (European Dysmelia Reference Information Centre) – an umbrella body not just for thalidomide but for all forms of congenital limb difference.  That way, we would attract the critical mass necessary to gain the attention of policy makers.  That way, peer networks could be formed for self-help.  That way, the remaining specialists could be brought together in their own network which could interact with our peer network which we call DysNet.

Six years down the line and EDRIC has 31 member organisations in 20 countries, including Limbs 4 Life.  DysNet is all over social media and the internet.  We reckon that we represent upwards of 6,000 people living with limb difference.  We’re about to host a conference to bring together those living with the condition with experts in Stockholm in October this year.  We’re also about to launch an information portal for parents who discover that they have or are about to have a limb different child.

As the cohort of thalidomide survivors advance through middle age, it’s great to be able to pass our learning onto young people with limb difference and to draw on their youthful energy and enthusiasm to carry on the good work.  Together, we are stronger.

Limbs 4 Life is proud to be an international member of DysNet. To find out more about DysNet and join their network visit www.dysnet.org

The power of networking by Geoff Adams-Spink (Chairperson of DysNet)