Wheelchair Basketball, an inclusive sport for Brian and everyone!

Brian2Brian Carminati, who lives in Melbourne, was born with a congenital condition known as Proximal Femoral Focal Deficiency (PFFD). It is a rare non-hereditary condition that affected the formation of his hip bone and consequently left him with just a femur. The condition can affect both sides so he considers himself lucky that it has only affected his right side. Brian started wearing a stiff prosthetic leg from age 3 until 5 years, after which he then underwent an operation to amputate the toes at the end shortened leg.  This meant that Brian now had an above-knee amputation which allowed him to wear a prosthetic leg with a moveable knee joint.

Brian played wheelchair basketball for about six months at age 16, while he was in Year 11 at school. After playing for one season Brian stopped primarily because he needed to concentrate on his Year 12 studies.  Brian’s mum wanted him to focus on his academic studies and was not aware of the opportunities to participate in sport, let alone wheelchair sports. When Brian started attending Caulfield Hospital his doctor told him about wheelchair basketball and the benefits he could derive from it. Coincidentally, on that day he was attending hospital, Brian happened to meet Billy Ferguson, a well-known wheelchair basketball player at the time.  Billy suggested that Brian visit Knox Basketball Stadium to watch a local competition, a visit which allowed him to meet wheelchair basketball players Paul Laidlaw and Campbell Message; both of who helped Brian to play.

In 2014, shortly after graduating from secondary school, Brian decided to start playing wheelchair basketball again.  Initially Brian started taking to the court at a local competition before starting to get really serious about his new sport. Brian attended one of Basketball Victoria’s wheelchair basketball clinics at Boronia and came under the watchful eye of Tom Kyle, the coach of The Gliders (Australian Women’s Wheelchair Basketball team). Tom encouraged Brian to work harder as he saw that Brian had the potential to become a national league player. Brian began wheelchair basketball training about once a week, and as a new player, tired very easily after only a short amount of hard pushing. From October 2014 Brian began to dedicate himself to serious training, which saw exponential improvements on and off the court as a player. In December 2014 Brian attended the Basketball Victoria Wheelchair Basketball Tournament in Shepparton.  While there Brian was encouraged by everyone in attendance including Brad Ness, captain of The Rollers (the Australian Men’s Wheelchair Basketball team).

Brian’s persistence didn’t go unnoticed and he was asked to train with The Rollers one morning per week at the Melbourne Sports and Aquatic Centre (MSAC), and regularly training at an elite level began to pay dividends for Brian. Brian now trains five times per week; including with The Gliders, The Rollers and other additional morning sessions with a group of state and national league players.

Brian admits that he used to live a sedentary life before Year 12 but since he began playing wheelchair basketball and training with the national teams, he has lost weight, become a fitness addict, maintained a healthy diet and strengthened his body and overall fitness.

Brian was invited to represent Victoria in the Kevin Coombs Cup National Championships (Wheelchair Basketball Championships for males under 23 years of age and females under 25 years of age) and played a role in helping Victoria achieve the bronze medal.

Brian feels very honoured to be a part of Basketball Victoria. “Ever since transforming my own life, going from an overweight sedentary video gamer to an emerging athlete, it has given me a whole meaning to life and now it’s starting to inspire other people around me to change their lives. As much as my own transformations make me happy, I feel extremely happy when it’s also transforming and inspiring other people’s lives. Hopefully in the future with greater achievements to come, I can still be an inspiration to others. Being on Basketball Victoria’s posters and videos definitely helps give me the opportunity to inspire others,” enthused Brian.

Brian has certainly left an impact on others.  Tom Kyle, the Head Coach of the Australian Gliders team, has much to say about how Brian has progressed over the years and what a talented, dedicated and kind young man he is.

“I first met Brian at a come and try event at Knox some two years ago. He was a very shy and timid young man and I think hadn’t had much time in a wheelchair let alone playing a contact sport like wheelchair basketball. I hadn’t seen Brian for over two years since that time until the Kevin Coombs Cup in 2015. To say he had transformed would be an understatement. Brian had developed into an outstanding young athlete; strong, determined, aggressive but still showing incredible sportsmanship. He dominated at the Cup and led his team in rebounding and shooting. From this, Brian was, quiet rightly, selected to represent his country in the Australian Development team in Dubai. Again Brian was a force for his team showing all the attributes of a future Roller.

The thing that strikes me most with Brian is that although he has turned into an extremely tough competitor who comes to compete each and every game, he remains the same quiet unassuming young man off the court. Very respectful and appreciative for any assistance he receives. He is a real credit to his family, friends, state and country. I trust Brian will continue to grow and, I believe, he will be an outstanding Roller of the future”.

Wheelchair Basketball is certainly a sport for all. It is one of the most inclusive sports in the world, allowing people of all ages and abilities to participate at both a grassroots level, just for fun, all the way up to National and International competition. If you are interested in trying wheelchair basketball contact Basketball Victoria on (03) 9837 8000 or visit www.basketballvictoria.com.au for more information. If you live outside of Victoria you are also welcome to call the team who can assist you to find a local team in your state or territory.

Limbs 4 Life is extremely grateful to Basketball Victoria for sharing Brian’s story and promoting the fun and inclusive sport of wheelchair basketball.  For more information about wheelchair basketball contact Basketball Victoria.

Rohan the ray of sunshine

Rohan1The Sunshine Coast in Queensland is not only an apt name for this beautiful part of Australia, but is also reflective of the ‘sunshine’ personality of eight year old Rohan McDonald.

Rohan is the son of Justin and Lyn McDonald and little brother to eleven year old Neil. Rohan and Neil are very close brothers, supportive of one another’s interests in caring for the many reptiles that also form part of the family, as well as participants in an array of sporting activities.

Rohan is described by Justin as “a very bright, outgoing child who is willing to give anything a go”.  Rohan is also showing an early interest in engineering and construction using his Lego collection, and love of maths, to build complex movable buildings.

Neil is showing an early orientation towards zoology, with a specific interest in reptiles and a desire to become a crocodile handler when he is an adult. Neil is not only described as an incredibly supportive big brother, but also as a child who is “older than his age, wise, caring, imaginative, perceptive and insightful”.  Neil is a natural carer of animals, spending considerable time in animated conversation with them.  Neil is equally just as caring about his brother and peers.  Indeed Justin wonders if the future will see Rohan build a crocodile sanctuary in which Neil will be the manager!

Rohan was born with congenital limb differences affecting both legs, one of which was identified pre-natally while the other was not apparent until after his birth, resulting in bi-lateral amputations when he was a toddler.  “At the 20 week scan we were told that Rohan had a club foot but, at that stage, other limb differences were not apparent,” Justin said.  “However, when Rohan entered the world it was obvious that his left leg was also affected, as he had multiple joint fractures and twisted tendons with this leg turned up and positioned under his bottom,” explained Justin.  Upon birth tests were conducted to determine the condition that was affecting Rohan’s left leg.  Initially Rohan was mis-diagnosed with Arthrogryposis, a rare condition where a child is born with joint contractures which means that some joints don’t move freely and may be stuck in one position; often resulting in muscles around these joints being thin, weak, stiff or missing.  However, this diagnosis was revised some months later in Melbourne.

Shortly after birth, Rohan went through ten months of left leg strapping by a Physiotherapist in Brisbane as well as numerous scans and x-rays to determine his post-birth development.  While Rohan was going through considerable assessments and physiotherapy, Justin began on an international search for further information about Rohan’s conditions and possible interventions that would improve his immediate and long-term outcomes.  Fortunately Justin was also able to call upon a good friend who is a Cranio Maxillofacial Surgeon in Melbourne, who recommended that he meet with Dr Ian Torode at the Royal Children’s Hospital.

“Meeting Dr Torode was a life changing experience, as he quickly identified that Rohan actually had Tibial Hemimelia and the bones in Rohan’s lower left leg would never develop.  Dr Torode recommended a Syme amputation of Rohan’s right foot, a centralization of his right fibula to give him a functioning patella and through-knee amputation of his left leg to provide improved mobility, less pain and ultimately a better life,” Justin explained.  After this meeting in Melbourne, Justin and Lyn met with a number of doctors who also discussed amputation or bone lengthening surgeries.  “We looked into bone lengthening but were told that given Rohan’s limb differences, surgeries would need to occur over many years and there could be no guarantee of success,” Justin said.

Justin and Lyn met with an Orthopaedic Surgeon in Brisbane who concurred with Dr Torode’s assessment and recommendation to take the path of amputations.  “We took about six months before we decided to go ahead with Rohan’s amputations, which included a few surgeries overall, and took place when Rohan was around 20 months of age,” Justin recounted.  Naturally, the decision to amputate was a time of worry and concern for Justin and Lyn and something that wasn’t made without considerable questioning of various healthcare professionals and personal researching.  “Something that assured us we were making the right decision was a comment made by Rohan’s orthopaedic surgeon in Brisbane.  He said to us that he felt honoured to work with Rohan because this is a surgery where he has the chance to improve a child’s life,” Justin revealed.

Justin and Lyn experienced the joy of seeing Rohan walk for the very first time, a month after his surgeries and immediately after he was fitted with his first prostheses.  “It’s hard to express in words the emotion, thrill and pleasure we experienced when we saw little Rohan walk for the first time.  We knew we had made the right decision,” Justin said.  As Rohan adjusted to wearing his “new legs”, Rohan came under the care of Physiotherapist Shail Maharaj, who is now the Lady Cilento Hospital’s Limb Clinic Coordinator. “The amazing rapport built between Shail and Rohan was integral to Rohan’s early development and adjustment, and we can’t thank him enough for being there to support Rohan and the rest of us in such a holistic manner,” Justin emphasised.

Rohan2Being located on the Sunshine Coast, Rohan now attends regular physiotherapy sessions with Amanda Fairbank from the organisation Montrose Access.  “We were so lucky to have moved from outstanding physiotherapy sessions led by Shail to the equally outstanding Amanda.  Amanda is an inventive, creative Physiotherapist who listens to our ideas and develops plans, strategies and paperwork that reflect her holistic approach and dedication to Rohan,” Justin explained.  Locally, Rohan is supported by Prosthetist Dewet Heyns from Sunshine Orthopaedic Services who, for many years, has been fitting him with new prostheses and recreational devices.  “Dewet and the team really understand Rohan and the complexities of his limb differences. Consequently Rohan’s ‘everyday legs’ are adjusted regularly due to his growth, and he has also been fitted with ‘swimming fins’, ‘running legs’ and ‘beach legs’ that have allowed him to participate in activities individually, with peers and with his brother Neil,” Justin outlined.

Rohan experiences some exhaustion at times, and when that occurs he uses a walking frame or walking stick for mobility.  However, where possible, Justin encourages Rohan to walk without assistive devices for exercise and to build independence and confidence.

Rohan participates in a wide range of activities.  At the moment the local Seahorse Nippers is a regular weekend activity, where Rohan is joined by other nippers to participate in kayaking, water activities and one-on-one support that sees Rohan confidently and safely swim into deep waters.  In the past Rohan also attended his local Riding for the Disabled centre, an activity that Justin feels is very beneficial for children and amputees because it “not only teaches children responsibility and commitment to an animal, but is also good for building core strength and improving balance”.  Rohan also uses a hand-cycle to ride and is learning the cello this year.

Rohan attended the 2015 Össur Mobility Clinic in Brisbane, developing skills and confidence that have contributed to improvement in his overall mobility and confidence. “The Mobility Clinic allowed us to meet some amazing adult amputees, parents, children with limb differences and allied health practitioners that we could really connect with,” Justin shared.  Rohan and Justin are pleased that even more amputees and children with limb difference to will be able to partake in the Sydney Össur Mobility Clinic this year.

One of Rohan’s most remarkable life experiences was being invited to a local meeting of Mates 4 Mates; an organisation that supports current and ex-serving Australian Defence Force members (and their families) who have physical or psychological wounds, injuries or illnesses as a result of their service.  Rohan was invited as an ‘honorary ambassador’ to meet group members.  Rohan started chatting with group members, showed off his prostheses and asked to try on prosthetic legs being worn by muscular and much taller members. Justin recalled that “one ex-serviceman, who was struggling with adapting to life as an amputee, spoke to me afterwards and told me that meeting Rohan significantly helped him to move forward emotionally.  This man saw confidence in Rohan that made him think that he could process what he had been through and accept life as an amputee.  I was honoured that Rohan’s attitude made a difference in the life of this man who gave of himself to our country”.

Rohan3When asked about his limb differences by adults and other children, Rohan explains it in a simple, accurate and forthright manner – “The doctor cut off my leg and foot because I didn’t have all my bones, and now I have new legs”.  Justin has worked with Rohan to ensure that he feels confident responding to questions, and if further information is required he is there to step in and provide more details. “I appreciate honesty and am pleased when people ask questions, as it is an opportunity to explain Rohan’s limb differences and reduce stigma in the community.  Many people have never met an amputee or a child like Rohan, so their questions and desire to learn more is something I really appreciate.  In the same way, if people are narrow-minded or make inappropriate statements about Rohan we are quick to inform these people because you never know if it is just a lack of knowledge or that something negative, completely unrelated to Rohan, is going wrong in that person’s life,” Justin emphasised.

Justin, who has worked professionally in the disability sector for over 20 years, is a firm believer in self-advocacy and encourages other parents to “never be afraid to ask questions, seek different professional opinions and speak to others”.  Justin feels that this approach applies to support for any children, but is particularly important when it comes to achieving the best outcomes for children with limb differences.  Justin also feels that the Limbs 4 Kids Facebook Group is a great way of meeting other families and gaining insight and new strategies from other parents.  “I like being able to share my experience and knowledge with other parents, while at other times I use it to gather practical tips and strategies posted by other parents – it’s a two-directional relationship that you can tap into any time of the day or night,” Justin said.

Justin hopes that ‘meeting’ Rohan via this article will assist other parents already on or just entering the world of childhood limb difference will assist them. He also wanted readers to know that Rohan and Neil would “like to say hello” to everyone out there.

Limbs 4 Life thanks Justin for taking the time to be interviewed and allowing Rohan and his family’s story to be profiled.  We wish Rohan and Neil all the best with their many activities, and look forward to hearing more about their budding interests in construction and reptile care over the coming years!

Kate’s story

Kate1We have recently welcomed to the world, our precious little Izabella. She is our second child and is very much loved after two previous losses. We lost a little girl at 19 weeks last year due to Trisomy 15, so when we found out that there were abnormalities at our 20 week scan this pregnancy, we were devastated.

Thankfully, due to our history, we were seen by a specialist straight away and were reassured that it appeared to be a developmental abnormality, rather than another chromosomal condition. Any news after that was actually a relief. Obviously everyone wants a baby that is healthy, with 10 little fingers and 10 little toes, but knowing that our little girl would have some physical differences, actually seemed like good news, as she would be alive!

We were told that her left arm had not grown past her wrist, but we wouldn’t know any more than that until she was born. Being a fairly pro-active person, I requested a referral to the Limb Deficiency (I really don’t like that word!) Clinic at the children’s hospital and also got in touch with Limbs4Kids. I was blown away at how much support there is available for families like us and it really put our minds at ease, knowing we could connect with other families and have professional support so easily accessible.

During our pregnancy, we only told family and friends who have a regular presence in our life, as we didn’t know whether there would be any other issues discovered after birth. Initially we weren’t telling people the gender of our baby, but it felt strange calling her ‘it’ and ‘the baby’. We were really clear that we wanted her to be welcomed into a loving and accepting community and having an identity before she got here, was important. In hindsight – it would always have been that way anyway and people’s reactions have been nothing but positive and supportive.

The most challenging conversations were with our two year old. We wanted her to know before her sister was born, so that it wasn’t a shock for her. Again, in hindsight, we made much more of this than it needed to be. Our daughter asked one question at the hospital about her baby sister’s hand and has never mentioned it since. It has surprised me at how accepting the kids have been. It is usually adults that ask questions and offer (often unsolicited) advice.

My mother bought a doll and removed its left hand. This gave us a talking point for our daughter, but it was really just an abstract concept for her. Her sister arrived two weeks after her due date, so I think she was beginning to wonder if we were actually even telling the truth about this mythical baby! At our first hospital appointment after Izabella was born, they gave us a doll with an arm that comes off. We have decided to keep this for Izabella when she is old enough, as her sister is doing just fine on the understanding and acceptance front!

We have discussed and requested that people use words such as ‘different ability’ rather than disability and ‘limb difference’ rather than limb deficiency. As she is still so little this hasn’t really come up yet, but it will be good to have consistency as she starts to talk about it and understand it herself.

One of the biggest considerations for us was what (if anything) to share on social media. I have a social media company, so I know the amazing benefits, but also the shadow side of social media. I was quite concerned about creating a digital footprint for our little girl that might limit her opportunities in the future. There were also many connections on Facebook that we hadn’t told yet, because we hadn’t seen them. Initially every photo we shared just didn’t show her left hand. That started to feel weird. I definitely don’t want Izzy growing up feeling like it was something we hid or were embarrassed by.

So after much discussion and asking for people’s advice, opinions and experiences, through the Limbs4Kids Facebook page, we decided to do a post that just explained her little hand and since then have not worried whether photos do or do not include her hand. All of our connections are people we are related to or know well and we have security settings fairly tight.

We may change how we approach this later on, however someone in the Limbs4Kids group said something that really resonated and I can see now that we made more of it than it needed to be. Jana said “She will feel about her difference how you react to it and how you respond to others reacting to it … the less you make her difference an issue, the stronger kid you’re going to raise.”

The great news is that although her left arm is shorter than her right and her muscles are a little under developed, she does have a wrist joint and a small pad like the palm part of her hand. So the likelihood is that she will only need a prosthetic if there is a particular sport or musical instrument she wants to play.

She is perfect in every way and a very happy and contented little soul at just five weeks. The adventure is just beginning!

Limbs 4 Life thanks Kate for sharing her heartfelt and informative story.  Congratulations to Kate and her family on the arrival of little Izabella!

Alex and his family’s story raises national awareness of limb difference

Alex and MarkThe story of Alex, who was born with congenital lower limb differences which resulted in Syme’s amputation of both feet, is featured in the CHILD magazine article ‘Heartbreaking Decision to Amputate’ (February 2016).

The interview with Alex’s mum Allison revealed what it felt like to learn about Alex’s limb difference during the pregnancy, his rapid adjustment after his amputations, and what a vivacious and sporty child Alex has become since his birth five years ago.  The article also reveals what it is like to be a busy family with twin sons – Alex and Marco.

Alex’s humorous side is also shown in the article, revealing that he will say “my legs ran away” or a “monster ate my feet” when discussing his limb difference with others.

This article will resonate strongly with the limb difference community.

CHILD is a free monthly magazine with a focus on national and local content of relevance CHILD FEB16to parents and carers of children from birth to 12 years of age.  Visit their website to read a great range of articles!

Visit local stockist to pick up copies of CHILD magazine.  Copies are usually available in libraries, toy shops, cafes, pharmacies, medical centres or schools.  To find your local stockist call (02) 8876 4800 or (03) 9830 0877.

Lachie and his family’s story raises awareness of limb difference

LachlanThe story of Lachlan, who was born with a congenital arm limb difference, and his wonderful family was featured in That’s Life magazine and The Daily Mail in late 2015.  The story of how Renee and Ian felt when they learned about their unborn son’s limb difference and the “limitless potential” that they see in Lachie is something that will resonate strongly within the limb difference community.

To read this family’s story visit their article in The Daily Mail.

Knox Gibson – drumming to his own beat

Knox 2As many parents and carers of children can appreciate, the life of a child is often one full of activity, adventure and trying out new things for the first time.  Knox Gibson, an eight year old boy from Orange in New South Wales, is no different.  Knox plays soccer, rugby, swimming, cricket and is learning the drums.  Knox is the son of Kate and Jack, and little brother to eleven year old Hamish and nine year old Arabella.

Knox is described by his parents as being “very confident, stubborn, determined, independent and cheeky”.  Knox also has a limb difference, having had his right arm amputated below the elbow after a traumatic accident when he was four years old.

Orange is a small city in the central west area of New South Wales.  Orange is a region that is surrounded by agriculture, well known for its fruit growing and food and wine culture, and was the birthplace of renowned Australian poet Banjo Patterson.  Both Kate and Jack grew up in small towns close to Orange, lived in Sydney for a time, but returned to live in Orange when they learned they were expecting their first child. “When we found out we were pregnant we made the decision to move back to Orange as we wanted our children to grow up in a regional town that we loved and was close to our families and friends,” explained Kate.

The Gibson family is a “busy one” with all children attending school and participating in various sports.  In addition, the children might soon be able to create their own band that would see Hamish play guitar, Arabella play piano and Knox play drums.  Both Kate and Jack also work full time meaning that, in addition to being an extremely organised household, they are also supported by their very involved extended family members.

It was the support and love of their close family and friends that Kate and Jack called upon when Knox had a farm accident which led to the amputation of his arm in 2011.  “Knox was being cared for by his grandparents when, despite being under the careful watch of his Grandad, he accidentally walked behind a ride-on lawnmower and became trapped underneath,” told Kate.  “The accident was no one’s fault, just one of those things that can happen, particularly when it comes to very active and adventurous children on farms,” explained Kate.

Kate and Jack were notified by family members about Knox’s accident just as they arrived home from work; a very frightening experience for both.  “Jack’s father called to tell us that there had been an accident and, because they live 45 minutes outside of Orange, they were driving to meet the ambulance along the way.  That they were going to meet the ambulance part way made us realise that it was a pretty severe accident,” said Kate.

“We met Knox at Orange Hospital and learned that his right arm was gravely injured, and that he also had deep lacerations and a fracture of his right leg.  Initially, and before we even knew what Knox’s injuries were, we were taken to a small private room at the hospital so knew we were facing some very serious news,” explained Kate.  Within a short time, doctors advised Kate and Jack that Knox would need to be transferred by helicopter to The Children’s Hospital at Westmead in Sydney, and were alerted to the possibility of an arm amputation.  “My sister was a nurse and, due to her knowledge and experience, she also thought an amputation might be necessary so did a great job preparing us for that possibility,” said Kate.

The helicopter could only accommodate one parent, so Kate accompanied Knox to Sydney. Meanwhile, Jack drove three and a half hours to meet them at the hospital in Sydney. Kate recounted that “it was the longest few hours in my life, as I was alone in the hospital receiving information about Knox’s condition while he underwent emergency surgery”.

It was during this time that the Orthopaedic Surgeon came out of surgery to inform Kate that two options were available.  One was to continue surgery that would last for up to sixteen hours, could possibly save a “non-functioning arm” but would come with significant surgical and post-operative risks that could be fatal to Knox.  The second option was to amputate Knox’s arm below the elbow and leave him with a residual limb that had a much better chance of functionality, would pose less risks to his life and allow Knox to be fitted with a prosthetic arm.

Kate recounted asking the doctor “what would you do if it was your child” to which he responded with “I would amputate”.  Kate knew that Jack, who was still en-route to the hospital and out of contact, would agree with her decision.  It was decided, that for Knox to have a normal life and to survive his injuries, amputation was the best option.

Knox’s accident was so serious that it was the first news item on the national breakfast television ‘Today Show’.  “I understand that journalists were trying to reach us but the hospital staff acted as gatekeepers and thankfully we weren’t contacted by the media, especially so soon after Knox’s surgery had ended,” related Kate.

“I can’t thank the staff at The Children’s Hospital at Westmead enough for saving Knox’s life and for performing a successful amputation that now allows Knox do virtually anything that any other eight year old can do,” Kate emphasised.

Knox spent four weeks recovering in hospital after his surgery; a time that included treatments, a final surgery to close his wound and meeting with various specialists from the Westmead Limb Clinic.  “For the first few days Jack and I were running on adrenaline and we barely slept.  It took a couple of days for Knox to come out of the ‘danger period’ but until that we just couldn’t sleep.  After that, and while Knox was recovering, we would take it in turn alternating who would stay with Knox, as we didn’t want him to ever feel alone,” explained Kate.

Family were of enormous support to Kate and Jack during Knox’s hospitalisation.  “We were in Sydney the whole time so relied on our family in Orange to take care of Hamish and Arabella”, said Kate.  This didn’t just include keeping up their school and extracurricular routines, but also providing them with the emotional support that being away from their parents and sick brother brought.  “Our parents and extended family members were amazing in looking after our children, Jack and I.  Each weekend our parents would bring Hamish and Arabella to Sydney so that they could spend time with Knox and us.  We couldn’t have got through that time without our family,” recounted Kate.

Friends and their children’s school were also enormously supportive during Knox’s time in hospital.  Kate commended the school attended by Hamish and Arabella “who kept an eye on them and ensured they were coping OK” and thanked friends “who brought food, fresh clothes and anything we needed to the hospital and the motel we were staying at”.

While Knox was recovering he was attended to by the Westmead Limb Clinic which provided the family with medical, social work and occupational therapy support. “The Limb Clinic team were fantastic and nothing but caring and Knox-centred throughout,” said Kate.

The Limb Clinic introduced Kate, Jack and Knox to a number of Prosthetists, allowing them to choose one that best suited Knox’s needs. “In the end we chose APC Prosthetics and have worked closely with Cameron Ward, from APC for four years now.  Cameron has a great relationship with Knox and clearly loves working with children”, expressed Kate.  Being so active Knox has had many limbs replaced due to ‘rough and tumble’ breakage and because he is growing, and has been introduced to a range of prosthetic arms to test and try over the years.

“Cameron is always available to assist us when Knox needs a new prosthesis, and we tend to see him in Sydney every six months,” explained Kate.   Knox now uses a myoelectric prosthesis as well as a fixed recreation one.  In addition, Knox has a variety of assistive devices that are screwed onto his ‘recreation arm’ to allow him to ride his bike, play cricket, play the drums, use a skipping rope as well as a range of other activities.  Knox took up drumming lessons a year ago, driven by a love of AC/DC’s music and beats. Indeed, the whole family are going to Sydney in November to see AC/DC perform and “Knox will no doubt be mime-drumming throughout the concert,” laughed Kate.

“Knox doesn’t wear his prosthetic arm all of the time but often uses it for specific activities.  All the assistive devices are incredible, but the one Knox uses to hold a drum stick and play music to is quite amazing,” said Kate.  “As Knox loves pirates, he also has a ‘hook arm’ which he likes to use for dressing up and fun,” laughed Kate.

Since his accident Knox has been undertaking occupational therapy through the Westmead Limb Clinic to ensure he is using his prosthesis to the best of his ability.  “Knox has been working with Nadia, an Occupational Therapist in Sydney, for many years now.  Nadia has played an important role in assisting Knox to learn to use his left-hand, because previously he was right-handed, and she has always assisted him to adjust to a new prosthesis and any assistive devices,” explained Kate.  As Nadia is located in Sydney, she is now working with the family to source an Occupational Therapist in Orange who can assist Knox with more regular fine motor skills training for his left hand.

Knox 5Knox is a very confident child who is not self-conscious about his limb difference.  “Knox accepts that his limb difference is just a small part of who he is and is quick to say ‘it got chopped off by a lawnmower’ if anyone asks why he is missing his arm,” said Kate.  Knox is also a very adventurous and curious child who amazes anyone who encounters him with what he can do.  “Knox is incredibly fearless and nothing holds him back, you only have to see him tackling the opposition on the rugby field to see that,” revealed Kate.

Knox is incredibly close to his two siblings, his grandparents, extended family members and family friends.  “Knox knows he is loved and supported by so many people and, the fact that he has lost an arm, is secondary to who Knox is.  Knox is himself first and foremost, and his limb difference is just a small part of who he is.  No one treats him any differently, and I think it is that attitude that has helped him to continue to be an active kid who will give anything a go,” said Kate.

Kate firmly believes that having a positive attitude has helped Knox and the family adjust to life since his accident.  “We are so lucky that Knox is alive, he could have died that day.  We are so grateful that Knox is still with us and, while his life path is now a little different, he can still do anything he sets his mind to despite the loss of his arm,” said Kate.

Kate also praised the Limbs 4 Kids program.  “We love that Limbs 4 Kids now exists, as there was nothing like this available when Knox had his accident. The Limbs 4 Kids website means that vital information is all in one spot, and being able to connect with other families and share experiences via the facebook group is just fantastic,” enthused Kate.

Limbs 4 Life would like to thank Kate for taking the time to be interviewed and allowing the story of Knox and her family’s story to be profiled in this edition of Thrive. We also wish Knox, Hamish and Arabella all the best with their sporting and music activities!

Harry, the little boy who just happens to have an arm limb difference

Mitten FamilyJen and Peter Mitten are great supporters of Limbs 4 Kids and have two young children, one of whom happens to have a limb difference.

Jen and Peter are parents to Harry, who is two and half years old, and Tobey, who is three months old.  Harry is taking to the role of ‘big brother’ with aplomb; has given his baby brother his own special name “Bubba”, is extremely affectionate showering his baby brother with kisses and already encouraging him to play with his precious toy cars.

Harry himself is, as his parents describe, “a cheeky, happy, sociable child who is at the wonderful stage in his life where the world is starting to make more sense and is full of wonders and new discoveries”.  Jen said that “Harry loves playing with adults and other children, but also enjoys his own quiet time where he can be found exploring colours, playing with his toys and learning about numbers”.  Harry also attends crèche and has just started playing ‘Little Kickers’, a weekend introductory soccer program for young children.

Harry also has a limb difference; born missing his left forearm below the elbow.  But as Jen and Peter said “Harry is Harry first and foremost, his limb difference is just a small part of who our little boy is turning out to be”.  “Harry’s personality is such that people often don’t notice his limb difference, as he captures the attention of others by performing tasks and playing in the same way as other two and half year old children do”, said Jen and Peter.

Harry’s limb difference was discovered during the 20 week pregnancy scan.  “We went in for the ultrasound scan, heard that our baby was developing well until the final part of the scan when we were told that it looked like his left arm was not fully formed”, explained Jen.  “This might sound silly, but my immediate response was to ask “so when will that arm start developing” and of course I was told that his arm wouldn’t continue growing and form”, said Jen.  “The radiographer was so compassionate and gentle delivering us the news and arranged for us to immediately meet with our Obstetrician”, recalled Peter.

Within minutes Jen and Peter were taken to see their Obstetrician, Dr Grant Saffer who was incredibly supportive and “on the ball” explaining to them what the test revealed and what it meant for their baby.  “Our Obstetrician immediately arranged for us to meet with Dr Leo Donnan, a Melbourne-based expert in childhood limb difference”, said Peter.

Meeting Dr Donnan allowed for Jen and Peter to ask all the medical questions foremost at their minds as well as practical ones such as “will our baby be able to tie his shoelaces and will he be able to ride a bike”.  Dr Donnan assured Jen and Peter that their baby would be fine and said that their ‘baby will end up teaching more to them than they will teach him’; something that they agree is not only a great motto but an accurate description of what has happened since Harry came into the world.  Jen and Peter are incredibly grateful to all the staff, from the radiographer to the various doctors, who treated them with such compassion on the day they received news about Harry’s limb difference.  Jen emphasised that “It made such a difference to have a team of incredibly supportive and positive professionals caring for us; giving of their time and knowledge to ensure we were OK and understood what the diagnosis meant. We never felt alone.”

After receiving the news Jen and Peter said “we operated in a blur for a little while, and we did share tears but it wasn’t long before our rational ‘we can cope with this’ minds kicked in”.  On the day that Jen and Peter learned their child would have a limb difference they started letting family and friends know.  “We didn’t want to hide our news, and we have such supportive family and friends we wanted them to be part of the journey we were now starting on”, explained Peter.  “Obviously our parents and family members wanted to learn about the diagnosis, but after realising that our baby’s limb difference was something we and our child could cope with, it wasn’t long before my soccer mad family were more concerned with what English team our child would be supporting!”, said Peter.  Both Jen and Peter felt that because they had a positive attitude about their baby’s limb difference diagnosis it meant that family and friends felt the same way too.

Harry’s birth was an exciting event for Jen and Peter. Peter recounted that “myself and another new father stood side-by-side while our new babies were being weighed and we just looked at each other in amazement about becoming new Dads”.  After Harry was born the staff conducted a few more tests to ensure that there wasn’t any additional developmental delays or issues; with none discovered.  So, Harry and his new parents headed home a couple of days later.  Jen laughingly recalled that “Peter put Harry into the baby-seat with such trepidation, drove home at 20kms under the normal speed and drove over any bumps at a walking pace”.

Harry doesn’t attend any specialist appointments at this stage, but will likely begin attending some as he gets older.  Jen and Peter said that “as Harry gets older we will explore the need for occupational therapy or other supports, but at the moment it isn’t required”.  Similarly, Harry doesn’t use any prostheses or other assistive devices at present and his parents have decided that they will look into in the future in conjunction with an older Harry.  What has amazed Jen and Peter most is what Harry is able to do, despite missing his left forearm.  “Harry’s dexterity in his right hand is extraordinary and he has developed high fine motor skills; in fact we call it his ‘super hand’”, Jen marvelled.

To date, by and large, the responses from community members about Harry’s limb difference has been very positive.  Jen said that “some people don’t notice that Harry has a missing forearm whereas others, both adults and children, are curious and will ask about his limb difference”.  Indeed, Jen and Peter prefer that people ask questions as they are happy to explain Harry’s limb difference to others “because it’s a way of normalising it and educating people”.  Jen recounted one situation where a parent stopped her in the supermarket asking whether it would be OK to enquire about Harry’s missing hand as this other parent’s child had noticed and was curious.  “I was really pleased that she did so as I was able to talk to both her and her child, after which her child wandered off with a better understanding and back to the important role of choosing the fruit he wanted”, related Jen.  “I certainly prefer it when people ask questions on behalf of their children rather than “shushing” them and telling them to look away”, said Jen.

The only negative experience was encountered in a local playground where a group of older children followed Harry while he played; pointing and staring at him.  Jen felt that the children, “who were old enough to know better”, were being rude and inappropriate so she took the opportunity to let them ask questions and remind them “it’s rude to point and stare at anyone”.  Their questions sated, the group of children wandered off and took their attention away from Harry.

Both Jen and Peter have found facebook, blogs and other resources to be extremely beneficial.  “The Limbs 4 Kids facebook group and other pages have been fantastic as, when you have a child with a limb difference, you can feel like you’re the only one and social media helps you to realise that there is a whole community of families experiencing the same things,” said Jen.

In terms of blogs, Jen and Peter can recommend ‘One Little Fin’ and ‘Living One-handed’ to be good for learning about limb difference and reading the stories of children and families.  Indeed Jen and Peter are looking forward to receiving their copy of Ryan Haack’s new book ‘Different is Awesome’ and plan on giving a copy of the book to their local library also.  Peter, who describes himself as “sports mad”, also recommends Jim Abbott’s inspiring and informative autobiography, ‘Imperfect – An improbable life’.  As Peter recounted, “Jim went on to play baseball with the famous Yankees team and win an Olympic medal, despite having a missing hand”.  Both Jen and Peter believe that everyday individuals and well-known persons with limb difference can act as role models and help families to see a positive future for their child; something that they feel social media and other resources facilitates well.

In thinking about their approach to parenting, Jen and Peter feel that it is “important to enjoy your children and try not to stress”.  “We believe it’s important that children fall over, learn how to climb, learn how to make friends, provide them with opportunities and let them experience challenges along the way”, said Jen and Peter.  In terms of Harry, Jen and Peter feel their job “is to make our little boy a well-rounded person who is positive and open, with his limb difference being just a small part of who he is and will be.”

Jen and Peter want to thank their families, their friends and all the others who have supported them since Harry, and now Tobey, have come into their lives.  Jen and Peter also want to thank the Limbs 4 Life community of families for being so welcoming, open and willing to share their own experiences of bringing up children with limb differences.

Limbs 4 Life would like to thank Jen and Peter for sharing their story and for being great advocates of the Limbs 4 Kids program.  In addition, Limbs 4 Life would like to thank Peter’s mum Mary and her colleagues at fellahamilton for fundraising and raising hundreds of dollars for the organisation earlier this year.

Gemma’s story

Gemma #2Five-year-old Mia stood at the gate to the playground. She wanted to see her friend, but couldn’t open the gate.

“Can you get Gemma for me please,” she shouted to one of the teachers in the playground.  The teacher was new. “I’m sorry, I don’t know which one is Gemma.” “Oh everyone knows Gemma,” replied Mia. “She’s the one with blonde hair.”

Mia could have used any number of adjectives for Gemma. Having blonde hair is just one, others would include tall, fast, sharp, talkative, blue-eyed, caring, determined, vivacious (perhaps a stretch for a five-year-old to use!), a climber, playful, inventive, imaginative, skilful, dexterous (maybe, see ‘vivacious’) or wilful.

And this sums up Gemma’s interactions with her friends. They see a tall five-year-old girl with blue eyes and blonde hair, who likes to have fun playing games, running around and using her imagination. Gemma responds in kind. She loves playing with her friends, but is also able to entertain herself for hours with her toys or drawing or making things with whatever’s lying around. Her determination is legendary at her daycare centre. Nothing fazes Gemma, and she will stick at a task until it is done, only sometimes asking for help. You can offer to help Gemma, but never presume to give it until it is asked for!

In the playground, with other children who don’t know her, Gemma can be an object of fascination. Some children take one look, and ignore. Others know there’s something different and don’t know why – they’re inquisitive and just want an answer. A few aren’t satisfied with that and hang around long enough for their parents to realise they’re now in the way. Gemma will provide her one answer to the obvious question, “I was born like it,” and then carry on playing.

In the playground, Gemma likes everything – swings, slides, climbing walls, up and down ladders and stairs, running around, in the cubby house. Parents will sometimes offer to help Gemma as they see a child who isn’t as able-bodied as their own. Gemma will probably tell them she doesn’t need it, and finish scaling the climbing wall up to the top of the slide before disappearing down it, and off somewhere else.

The parent might then come up to us and comment on how wonderfully able and polite Gemma is, as she would have declined the help with a “No, thanks.” They might even satisfy their own curiosity and ask what happened. They get the same answer that Gemma gave, “She was born like it,” before we’re tugged in opposite directions to watch over our respective children.

Gemma goes to school in 2016. Many of the children at her local school already know her as Zoe’s little sister. They know about Gemma and what she can do, and don’t bother either getting in the way or offering to help – they know Gemma will ask. Many there, though, don’t know Gemma, so she will go through the whole routine of meeting new people and their reactions many more times in the coming couple of years. It does seem of interest to children aged 5 to 7. Younger than that, and they just don’t notice. Older than that and they notice, but either don’t want to pry, or don’t really care.

There will be more parents that won’t be sure what Gemma can or can’t do and whether she can be invited to a particular birthday activity – Gemma will tell them, and we’ll leave it up to her to decide. We’ll help those parents, and teachers, who aren’t sure what to say or do, and we’ll make sure that Gemma gets to do what she wants. Within reason, just like any other five-year-old child.

Gemma’s Story by Lee and Kate

What I didn’t expect when I was expecting

Di Guglielmo FamilyMy name is Maria Di Guglielmo. I am married to Tony Di Guglielmo and we have two children; Claudia 11 years old and Lucas J who is 9 and a half years old.

Our son Lucas was born with Tibial Hemimilia. He was placed in my arms after just coming into the world, wrapped in a warm blanket and those gorgeous big eyes blinking away at the lights above us in theatre. It was love at first sight, all over again, he was perfect. Whilst I was in recovery I could sense that something was wrong. The doctors placed Lucas on an examination table, they had their backs toward me and I knew something was wrong from Tony’s body language. I yelled out to Tony “Is something wrong?” and Tony looked and he said “there’s a problem with Lucas’s leg”.  I went numb … What was going on? So many questions, so many concerns, and so much sadness.

The doctor’s unwrapped Lucas from the blanket to show me his leg. All I could hear was people saying “it’s ok, it can be fixed”. As soon as I saw his foot, I knew there was no way that could be fixed – it didn’t even look like a foot. I suppose Tony and I were grieving. A part of us was happy we had a son, but the deformity was not welcomed and acceptable. I was in shock.

The shock and disbelief went on for weeks. I spent my days going over and over all that I did during my pregnancy that may have caused this. I needed answers.  We had our first appointment with Dr Torode when Lucas was four weeks old. I was in a bad state. All I remember him saying was “the surgery is still a good nine months away, take Lucas home and enjoy him”. He was so right, I suppose I was so consumed with the shock of it all that I never looked at Lucas as an innocent, helpless, beautiful baby. My beautiful baby.

Lucas was 12 months old when his foot was amputated. We went through yet another grieving process, because as deformed as his foot was, it was a part of him that had been taken away. Lucas recovered very well. I remember on the third day after his operation he greeted his surgeon Dr Ian Torode from the Royal Children’s Hospital during his morning rounds. Lucas was standing in the hospital cot hanging onto the cot bars in a nappy banging his plaster against the cot bars making a  ‘clunk, clunk, clunk’ noise with a great big smile on his face. Dr Torode took one look at him and said “looks like this little fella’s ready to go home”.

Lucas had his second surgical procedure to fuse the bones in his leg when he was three years old. We were lucky to have had so much support from friends and family, but also the Royal Children’s Hospital would check in also. We had an Occupational Therapist and Physiotherapist from our local council visit us at home on a weekly basis to assist us in any way. They were fantastic! Again, Lucas recovered so well, always with a smile on his face. It’s amazing how resilient children are.

To date I still don’t know why this has happened or how this happens. I suppose in time you learn to stop searching, and just accept it. Knowing won’t change anything, it won’t make it any easier, but now years later I am ready to investigate Tibial Hemimilia further. In our situation we were unaware at birth about Lucas’s limb difference. I believe any expectant parents would still grieve and go through that process during the pregnancy. There’s also the advantage of preparing for it in the way of creating a support network via your local health and maternal nurse, your local council, and in particular Limbs 4 Life.

I wish I knew about Limbs 4 Life before I did. We saw a Limbs 4 Life newsletter when Lucas got his first leg at Orthopaedic Techniques in Fitzroy and I took one home to look up the website. I rang and spoke to a lovely lady at Limbs 4 Life. I remember we had quite a lengthy conversation about Lucas. I remember I kept apologising for being so emotional whist telling her my story. I remember breaking down yet again, not wanting to hang up, because finally I was speaking to someone who truly understood how I felt. I didn’t feel so isolated anymore.

Attending Limbs 4 Life family events has also been wonderful. The kids meet other children with limb differences, siblings meet other siblings, and the parent support is fantastic. I’m so happy I picked up that brochure when I did, and it might be a good idea for all health and maternal centres to offer information to new mums in the same situation. I would be willing to be that voice on the phone or a coffee companion to anyone going through the same situation either pre or post pregnancy.

I love my children equally. Claudia has such a beautiful heart, and is growing up to be an exceptional young lady. Lucas also has a big beautiful heart and has taught me a lot. He is a funny and talented young man.

We’ve been blessed with two beautiful children.

What I didn’t expect when I was expecting by Maria Di Guglielmo

Talking about Victor’s leg

Prosthetic Leg #7When our son Victor was about three and a half years old, his kindergarten teachers noticed some of the children (aged between three and five years) who had been with him in the centre for about 10 months had started to become curious about Victor’s prosthetic leg. The staff invited me to come and do a talk with Victor about his leg to his classmates. I want to share our experience, how we approached this and our template for the storybook introducing Victor.

Firstly, I spoke to Victor about my talk to his peers, so there would be no surprises and he would be comfortable with it. I was clear about my purpose and made sure it was short in duration. I took a bag with Victor’s earlier prostheses in it, and initially kept it out of view. I told the children that when Victor was born, he was a beautiful baby, and that he had one big leg and one little leg. I explained that when he started to walk, he found it was hard to do with one big leg and one little leg, so when he was two years old, the doctors changed the shape of his leg so he could wear a bigger leg on top of his little one. This meant his two legs would be the same size and he would be able to walk more easily.

At this stage, I took Victor’s old prosthetic legs out of the bag and showed the children how each prosthesis looked, inside and outside, so they could see that Victor’s leg went inside it. I explained that as Victor grew, his prosthetic leg did not grow, so we had to get a new one. I made a big fuss about Victor being able to choose the pictures he wanted on his legs, and that when he was two he liked Charlie Bear, and then he liked Spiderman, and now he likes Buzz Lightyear. I said that Victor has two Buzz Lightyear toys at home. At this point I had lots of children wanting to tell me about how many Buzz toys they had at home too. They were very excited about the pictures.

Prior to the talk I had asked Victor if I could pass around the legs for the children to feel them, and he had agreed, but when I saw the children so excited, I thought that they might become confused and think they could come up and touch Victor’s legs whenever they wanted to. So instead I pointed out, “You wouldn’t like it if someone came up and kept grabbing your legs, would you?” They responded, “No!” I explained that Victor wouldn’t like that either and that his legs were just like their legs – not for other people to touch.

Some of the children asked about the next picture Victor would have on his leg, but one boy asked, “When Victor is a man, will he still have a leg like this?” I explained to this intelligent boy that Victor would continue to grow bigger and bigger, but that he would always need a leg like this.

The teachers and I felt that the talk went well, but it was clearly stressful for Victor to be the centre of so much attention. He started rubbing his eyes nervously during the last part, so I took him home for lunch while the other children had rest time and he happily returned in the afternoon.

I took a book with me that I had prepared with Victor about his legs, and left it at the kindergarten for his teachers to use. Victor had input into the book and made his own edits to the choice of words in it. I used simple language, appropriate for the children’s age group, and focused not only on Victor’s prosthesis but also his likes and interests. We included plenty of photos of Victor relating to the text, showing him playing with his friends, or wearing his various colourful prostheses. I didn’t include any photos of Victor’s residual limb after amputation, and all of the photos showed

Victor wearing shorts. Here is the text from the book I shared:

I am Victor.

This is a story about me and my legs.

This is me with my Daddy and me with my Mummy.

When I was born, one of my legs was bigger than the other one.

It was hard to walk with one leg bigger than the other one, so I got a leg I could put on top of my leg to make it bigger.

This is my first leg.

This is my Charlie Bear leg.

This was my second leg.

This one is my Spiderman leg.

This is my new leg.

This is my Buzz Lightyear leg.

I can do everything with my legs.

I love running and kicking balls. I love riding my bike.

I love jumping and playing with my friends.

I have two fantastic legs.

I didn’t go into detail about the amputation surgery, as at that age I had not explained to Victor what his surgery had entailed; only that they had changed his leg so he could wear his prosthetic leg, and also, I didn’t want to alarm the children. I made sure the book had no information that Victor didn’t already know, so like our talk to the class, the book would not hold any surprises for him. I created the book in MS Publisher and printed it at Officeworks in colour-on card paper. You could also use MS Word, but it is not quite as easy.

There was one complication that arose a couple of months later, when Victor kept crying at the prospect of going to kindergarten. After a few weeks, he confided to me that there was a boy who had been touching his leg repeatedly. I spoke with the teachers about this and discovered that the child was in another room, that he had additional needs and was unlikely to understand requests not to do so by the educators. I also found out from other parents that the boy concerned was autistic. I was relieved it wasn’t one of the children in Victor’s room, and the teachers monitored the situation and it stopped occurring. I was surprised that it had taken weeks for Victor to tell me, and I could see from my questions and his subsequent behaviour, that he has a tendency to try to be brave and to cope by himself without seeking help from his teachers. We have been working on this and trying to get him to seek help from his teachers more.

I think the talk and the book has helped Victor clearly communicate about his legs. Since the age of four, I have taught him to use the words ‘prosthetic leg’, and he handles the rare questions he gets by talking to children like they should understand what a prosthetic leg is. My husband Vlad and I decided never to use the word ‘stump’, as we don’t feel comfortable with it. We simply refer to his ‘little leg’ and now his ‘prosthetic leg’, but earlier it was his ‘Buzz Leg’, or whatever the picture was.

This year, Victor has expressed on a number of occasions that he wishes he had another foot ‘like this one’ (his own foot), and has noticed that his left knee is small. He is occasionally sad about this, but not for long, and so far, not with great intensity.

Wishing other families in our network all the best and I hope our shared experience is useful for some of you.

Talking about Victor’s leg by Ruth