Train as a Parent Peer Support Volunteer

Peer Support CloudwordAre you interested in being trained as a ‘Parent Peer Support Volunteer’? If you are the parent/carer of a child with limb difference or an adult who grew up with childhood limb difference this volunteer opportunity might be for you? A FREE webinar to train volunteers is being run by Limbs 4 Life on Thursday 26th November 2015, 8pm AEDT.

Trained Volunteers can then be matched to other parents / carers seeking the support of another person who ‘has been through what they are going through’.  Peer support may be provided over the phone, via an email or occasionally a face-to-face meeting.

The FREE training will involve participants submitting an Application Form, being police checked, taking part in a one hour webinar training session (Thursday 26th November 2015, 8pm AEDT) and undertaking a short survey after the training.  You will also receive a Program Manual, full support from Limbs 4 Life staff and be insured as a formal Limbs 4 Life volunteer.

The Parent Peer Support Volunteer Program is being offered by Limbs 4 Life, through our Limbs 4 Kids program.

If you would like to reserve a place in the training or want more information about the Parent Peer Support Volunteer Program contact Fiona at kids@limbs4life.org.au or call 1300 782 231.

Alternatively, download and return the Application Form via email to reserve your place immediately.

We hope you can join the training and become an important Limbs 4 Life volunteer.

September Limbs 4 Kids E-News goes live!

E-News September 2015The first edition of the Limbs 4 Kids E-News is now live!

This edition features a variety of information about upcoming family events, NDIS roll-out details, research studies, an article from a young man who grew up with limb difference and details about upcoming Peer Support Volunteer training to name but a few.  We hope you enjoy the read!

Take part in a congenital fibular hemimelia research study

Do you live in Australia and are the parent of a child (aged 7 – 21 years), or a young person yourself, with congenital fibular hemimelia and would like to help others?

Dr Louise Tofts and the rehabilitation team at The Sydney Children’s Hospital Network are trying to find out more about the quality of life and lower limb function of children and young people with congenital fibular hemimelia.

This research study involves three questionnaires, and it is expected that the information gained will greatly improve outcomes for Australian families and children with congenital fibular hemimelia.

For more information click on the flyer below or contact Joshua Pate at joshua.pate@health.nsw.gov.au or call (02) 9845 2823.

Fibular Hemimelia Study

Train as a Parent Peer Support Volunteer

Peer Support CloudwordAre you interested in being trained as a ‘Parent Peer Support Volunteer’? If you are the parent/carer of a child with limb difference or an adult who grew up with childhood limb difference this volunteer opportunity might be for you?

Trained Volunteers can then be matched to other parents / carers seeking the support of another person who ‘has been through what they are going through’.  Peer support may be provided over the phone, via an email or occasionally a face-to-face meeting.

The FREE training will involve participants being police checked, taking part in a one hour webinar training session (Tuesday 20th October 2015, 8pm EST) and and undertaking a short survey after the training.  You will also receive a Program Manual and full support from Limbs 4 Life staff.  Volunteers must be based in Australia.

If you would like to reserve a place in the training or want more information about the Parent Peer Support Volunteer Program contact Fiona at fiona@limbs4life.org.au or call 1300 782 231.

Thrive magazine (Spring 2015 edition) now available

Cover Thrive Spring EditionThe Spring edition of Thrive magazine is now available.

This edition features articles about: Harry and his parents Jen and Peter Mitten; Ben Swain, an adult who grew up with limb difference to become a lawyer and para-cyclist; two Prosthetists, Cameron and Patrick; Jessica Smith; and, information about our upcoming webinar Parent Peer Support Training program.

If you would like hard copy versions of the magazine just email kids@limbs4life.org.au or call 1300 782 231.

We hope you enjoy the read!

2nd September 2015

Multi-lingual Portal Launched to Help Parents of Children Born With Limb Difference

What If Portal 2A multi-national portal to provide advice and support services for the parents of children born with limb disabilities is being launched today (Friday July 31).  The site can be accessed via whatifyourbaby.org.

The portal is run by an umbrella body of organisations of people affected by congenital limb difference called EDRIC (European Dysmelia Reference Information Centre).

The project was made possible following a crowdfunding campaign with Indiegogo.  A total of €17,000 (then the equivalent of £13,400) was raised.

EDRIC’s research showed that new and expectant parents of limb different children were desperately seeking answers and not finding the right information.  The ‘What If? Your Baby Has a Limb Difference’ portal was created to fill that gap.

The portal is available in five languages – English, French, Spanish, Italian and German.  Short videos and blog articles are accompanied by a directory of services including specialist clinics and support groups.  Social media will be used extensively to promote the site.

“Having a child with a limb difference often comes as a shock to parents, many of whom don’t know who to turn to for help,” said EDRIC Chairman Geoff Adams-Spink.

“Now that we’ve launched the site, we’re hoping that parents and those living with a limb difference will feel inspired to contribute their own videos and blogposts to help new and expecting parents to find the answers that they so desperately need.”

Prior to launching the portal, EDRIC undertook research that showed that the majority of parents of children with congenital limb difference (known as dysmelia) are unaware of any available resources.  A survey conducted by the organisation showed that 80% were not aware of any sources of help or advice to support them during their child’s early years.

Four respondents reported that they were given less than an hour to decide whether or not to terminate pregnancy after a diagnosis of limb difference.  Another respondent said she was offered a termination five months into the pregnancy – her child had just one hand missing.

“We need to turn this situation around,” said Mr Adams-Spink.

“People are either shocked when their child appears or they have an ultrasound scan and are unsure whether or not to proceed with the pregnancy.  It’s important, at this time, that parents or parents to-be are aware that people live happy and fulfilled lives with a limb difference.”

The organisation is keen to stress, though, that it is not part of any pro-life lobby: it believes that women have the right to determine what happens to their bodies and that an informed decision will be the right one for the parent or parents concerned.

New stories available now!

Shane LukeWe have uploaded two new articles to the Stories section of the website.

One story is about Shane Luke who lost his leg to cancer when he was 15 years old, and who now works in the prosthetics industry and is a champion golfer.

The second story is about Cynthia and Emma who are currently studying for their Masters in Prosthetics and Orthotics at La Trobe University.  Cynthia and Emma discuss the program, their career goals and interest in working with children.

Both articles featured in the winter edition of Limbs 4 Life’s Amplified magazine.

Take part in the survey for Australian parents / carers of children with limb difference

Survey ImageHave you taken part in the Monash University research into the Limbs 4 Kids program and the needs of Australian parents / carers of children with limb difference?

The confidential survey only takes 10 minutes to complete and it is anticipated that the outcomes of this research will strengthen the program and enable Limbs 4 Life to advocate on behalf of parents and children with government and policy-makers. It is the first research of its kind in Australia.

To access the survey – https://monashmnhs.qualtrics.com/SE/?SID=SV_9RF3r5la6vo6k4t

If you need further information please contact the lead researcher Dr Narelle Warren on 03 9903 4046 or at Narelle.Warren@monash.edu

Win a copy of the ‘Little Miss Jessica Goes to School’ book!

Little Miss Jessica BookJessica Smith has kindly donated a signed copy of her book ‘Little Miss Jessica Goes to School’ to Limbs 4 Life and we would like to give this to one of the children in the Limbs 4 Kids community.

Jess is a former Australian Paralympian swimmer who was born missing her left forearm and this is her first children’s book. Her book is about a little girl with one hand, who goes to school for the very first time and experiences what it feels like to be ‘different’. The book, although targeted at a younger audience, contains many crucial messages for young people as well as adults, about body image, self-acceptance, tolerance, difference, friendship and respect. For more information visit Jessica’s website.

To win a copy we are asking that children tell us in 50 words or less what their first experience at attending kindergarten, pre-school or school was like. Children can write their own or ask parents to write their story down for them. Please email your child’s story to us at kids@limbs4life.org.au by the 20th of July. We will publish the winner in the next edition of Thrive magazine.

Good luck everyone!

Speech about Limbs 4 Kids in the Australian Parliament

HansardAfter the launch of our new Limbs 4 Kids program, Limbs 4 Life received numerous congratulations and recognitions from Ministers and Members of Parliaments across Australia. The Hon. Warren Entsch MP (Federal Member for Leichhardt), who has personal experience of limb difference, kindly made a speech about Limbs 4 Life and the Limbs 4 Kids program in the Australian Parliament on the 16th of June 2015.  We thank Mr Entsch for bringing attention to the needs and resilience of children with limb difference to the Australian Parliament and public.

In his speech to Parliament Mr Entsch said:

Limbs 4 Life is Australia’s peak organisation for amputees and persons with limb difference. This month, they launched a new program – Limbs 4 Kids. For the first time, all Australian children and young people with limb differences and those who care for them have a program and a website to call their own – www.limbs4kids.org.au.

It is a source of great information, contacts and resources for parents and healthcare workers who care for children and young people who are born with a limb difference or who have had a limb amputated during their childhood. The website features a learning centre, online forum, stories, videos, and Thrive magazine, together with networking and training opportunities.

Australia is estimated to have over 2,500 children and young people with a limb difference. My beautiful granddaughter Sarah Victoria is one of them.

Sarah was born with a missing forearm as a result of the umbilical cord cutting off the circulation in-vitro. Sarah has not let this stop her in life. She is as active as any other child and enjoys riding horses and quad bikes. She is now 10 years old and wants to be able to ride a dirt bike like her father. She recently tried on her first prosthetic arm, which was very exciting and very successful. She got up for the first time recently with this new arm to ride a bicycle and now she is very confident to getting on these quad bikes.

I commend the Limbs 4 Kids program and the nib foundation for its generous support.

Read the Hon. Warren Entsch’s speech here.