Australia’s first program for children living with limb loss launched

Limbs 4 Kids Home Page ImageAs of today all Australian children and young people with limb differences and those who care for them have a website to call their own – www.limbs4kids.org.au   The Limbs 4 Kids website is an initiative of Limbs 4 Life, Australia’s peak organisation for amputees and persons with limb difference.

The Limbs 4 Kids program and its website is the first of its kind in Australia; providing comprehensive information and resources for parents and healthcare professionals caring for children and young people with congenital and acquired limb differences.

Melissa Noonan, Chief Executive Officer of Limbs 4 Life, said that “the national Limbs 4 Kids program and website will support and resource the thousands of Australian families who care for children born with a limb difference or who have a limb amputated during their childhood”.

In Australia it is estimated that over 2,500 children and young people have a limb difference.  A limb difference may be caused by a congenital condition identified during pregnancy or soon after birth, or as a result of a limb amputation due to trauma, infection or cancer.  Some children with a limb difference use a prosthetic limb while others may not and use other assistive devices instead.

The Limbs 4 Kids website is a key feature of the new Limbs 4 Kids program; established in response to needs identified by parents of children with limb difference and underpinned by research conducted by Monash University.  The Limbs 4 Kids program facilitates connections between parents, offers peer support, provides ‘on demand’ information and resources and is increasing knowledge about limb difference in the wider Australian community.

A key feature of the Limbs 4 Kids website is its Learning Centre.  “The Limbs 4 Kids Learning Centre is the first online library of its kind in Australia, containing information about the key physical, social and educational milestones experienced by children and young people with limb difference.  This library also covers issues that particularly affect families caring for a child with limb difference and provides tips for how to address these”, said Melissa.

Additional website features include a link to the closed Limbs4Kids Facebook Group, stories, videos, publications, Thrive magazine and opportunities to access peer support or become a trained Peer Support Volunteer.

The Limbs 4 Kids program is generously funded by nib foundation who, like Limbs 4 Life, are committed to ensuring that all children with limb difference and their caregivers receive access to informed and timely support.

5th June 2015

Thrive magazine (Winter 2015 edition) now available

Thrive Winter Cover (small)

The Winter edition of Thrive magazine is now available.

This edition features:  Gemma’s Story; NDIS information; details about how to participate in Limbs 4 Kids research; an article with Shail Maharaj, a Paediatric Physiotherapist in Queensland; information about the international limb difference organisation DysNet from its Chairperson Geoff Adams-Spink; the importance of self-advocacy; and, details about how to get involved in Limbs 4 Kids.

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!

17th June 2015

Össur Mobility Clinic

Mobility ClinicProudly partnering with Limbs 4 Life, Össur presents a 2-day Mobility Clinic designed for amputees / persons with limbs difference of all ages and activity levels for a truly unique experience to improve overall mobility while connecting with other amputees.

Professor Robert Gailey PhD, renowned expert in amputee running and training, will teach amputee attendees how to walk and run like a champion or simply improve multi-directional mobility. The Clinic will be delivered on the 28th and 29th of September in Brisbane.

Register here: www.ossur.com.au/ossur-mobility-clinic

Join the Limbs 4 Kids Facebook Group

Parents and carers of children and young people with a limb difference may want to join our Limbs 4 Kids Facebook Group.  As this is a secure Facebook Group you will need to ask to join and Limbs 4 Life will then approve you to become a member.  This Group provides a space for parents to connect with one another and share information.

The Facebook Group can be found at www.facebook.com/groups/349205931872070

Limbs 4 Life’s ‘Amplified’ magazine released (Autumn 2015 edition)

amplified_Autumn_cover_smallLimbs 4 Life’s free Amplified magazine is distributed nationally free of charge in digital and print formats. Featuring profiles and perspectives from amputees, Amplified also covers a diverse range of topics including health and wellbeing, advocacy and articles relating to amputees.

This Autumn edition features an in-depth article about phantom pain and personal profiles including mighty mum – Mandy McCracken. Download your own copy of the latest edition of Amplified.

If you would like to receive future copies of Amplified visit www.limbs4life.org.au and join the mailing list.

Limbs 4 Life becomes the 31st member of EDRIC (European Dysmelia Reference Information Centre)

DysNet logoEDRIC (European Dysmelia Reference Information Centre) is an umbrella body for all forms of congenital limb difference.  Based in Europe, EDRIC brings together individuals with limb difference, specialists and peers.  Established in 2009, EDRIC has done much to bring matters related to limb difference to the attention of policy makers and specialists across the world.  In 2012, EDRIC launched DysNet, a network that facilitates connections between peers and houses considerable information and resources about limb difference.

Limbs 4 Life is proud to be an international member of EDRIC.  To find out more about visit www.dysnet.org

Support for youth with limb deficiency and their families to be rolled out nationwide

nib foundation logoChildren with limb deficiency and their families will no longer be a forgotten age group of amputees with the national expansion of a unique program that alleviates the challenges associated with limb loss.

Ongoing funding from nib foundation will see the one-of-a kind Carers, Children and Youth program run by Limbs 4 Life, become available to all Australian children or young adults who undergo limb amputation or are born with limb difference, along with their families and carers.

Limbs 4 Life Executive Officer, Melissa Noonan said the age-specific, targeted program provides access to valuable support services and information to empower children and their families to deal with their limb difference.

“Each year approximately 100 Australian children are born with limb deficiency while a further 100 children face amputations due to cancer, infection and trauma-related causes,” Ms Noonan said.

“In addition, Australia has the second highest rate of diabetic amputations in the developed world making organisations like ourselves an important resource for amputees and their families to be able to access information and support,” Ms Noonan said.

Sydney teenager, Sarah Walsh, wishes that such a program was available for her when growing up. A symes amputee who had her foot amputated at just 18 months old, the 16 year-old Paralympic athlete hopeful said that peer support programs are an invaluable tool for young people living with limb loss.

“Sometimes we need help, not from the people closest to us but from those who have bravely taken on the challenge of living with a limb loss. When I was growing up it would have been amazing to be able to talk to someone who was growing up missing a leg,” Ms Walsh said.

“Peer support helps immensely, they might have worked out a way to deal with certain situations or know the way someone else is feeling. It’s a great way to share their understanding with other people who are going through the same thing they went through,” she added.

nib foundation Chairman, Keith Lynch, said the positive outcomes the program delivered over the first two years prompted the foundation to continue its support.

“Research conducted by Monash University has shown that this program is an effective model for promoting the health, wellbeing and social inclusion of children living with limb loss,” Mr Lynch said.

“Our ongoing funding support will now see the program extended across Australia. It will help prevent social isolation, build resilience and develop confidence in these young people and their families by connecting them with a supportive organisation and communities of people in similar situations,” he added.

The program will also be conducted online through the development of a dedicated website, online forum, webinars and podcasts to facilitate greater interaction between families.

“Feedback from our families has shown that there is a greater need for online delivery of the program to allow parents and carers to access information at a time that suits their needs and to allow them to connect with others in a private forum,” Ms Noonan said.

“The new online component of the program will allow us to do just that, as well as enabling us to distribute information and resources to a wider audience,” she added.

The new program will be available from May 2015.