Thrive NEWS FROM LIMBS 4 KIDS GARY JOHNSTON LIVING WITH LIMB DIFFERENCE TRAIN AS A CARER PEER SUPPORT VOLUNTEER OR START UP A LOCAL SUPPORT GROUP PLAY, EDUCATION AND SOCIAL INCLUSION SARAH WALSH JUMPING FOR GOALS MARCH 2015 EDITION Introducing Limbs 4 Kids Living with limb differences – Meet Fiona a journey from childhood to adulthood The ‘Carers, Children and Young of interest to children, young the National People Program’ was initially people and families. My name is Gary and I am a simple terms it means I was born fused bones and a malformed developed in Victoria and funded person who started life with limb missing the three middle fingers calcaneal (heel) bone; making by nib foundation in 2012. This Limbs 4 Kids Fact Sheets. differences. I’m pleased to share of my left hand as well as fused it impossible to walk properly, Manager of pilot program provided support These informative resources will my story as I hope it can highlight bones and missing toes on my left let alone run. The amputation and information to suit the needs made available on the Limbs 4 that ‘being different’ doesn’t stop foot. I had a Syme amputation enabled me to fully participate in Limbs 4 Kids of children and young people Kids website and as hard-copy you from achieving all your goals when I was five at the Royal the community, in sport and in with a limb difference and the documents. in life. I also wanted to speak to Children’s Hospital in Melbourne employment. I wear my prosthesis carers that support them. This you about the important role that and I also had further revision foot every day, from the moment I funding also allowed us to Peer Support Training for Limbs 4 Life has played in my life surgeries during my teenage years get out of bed until I retire in the partner with Monash University Carers. This training is specifically and how excited I am that the and adult years. I now consider evening - I find it very comfortable to learn about the needs of for parents and carers of children Limbs 4 Kids program is going to myself to be both a person with a and very much an extension carers, children and young and young people with a limb support all Australian children with limb difference and an amputee. of “me”. Over the years I have people and determine ways we difference who want to volunteer limb differences and their families. developed a sense of where my Limbs 4 Life welcomes Fiona can enhance the program and their time to support others. Looking back, the Syme foot is in space, almost like a Waugh to the team as the National expand it across Australia. I was born in 1962 with a amputation that I had as a child sense of touch. For instance I can Manager of the Limbs 4 Kids Limbs 4 Kids Support Groups. congenital condition called changed my whole life. Prior to tell without looking where my foot program. Fiona has managed and As a result of the success of the Assist parents and carers to ectrodactyly which resulted in both the surgery my foot was rotated is placed on the car accelerator or established a variety of programs pilot program, nib foundation establish informal Support hand and foot limb differences. In 75 degrees, had only 3 toes, had on the pedal of my bike. My hand and partnerships in the education, are now generously funding Groups in their own local youth, disability and welfare sustainable expansion of the communities and provide all the sectors. Fiona is passionate about program across Australia necessary resources, tools and supporting children, young people between 2015 - 2017. We advice to do so. and families to reach their potential are calling the new program and achieve their goals. Fiona has ‘Limbs 4 Kids’, a name that Social events. Informal social been involved in Limbs 4 Life since was actually devised by some events that will allow children, its beginning, was the founding parents and young people that young people and families to Chairperson and a member of the were part of the pilot program in connect with one another. Board over that period. Victoria. Information sessions. Formal Feel free to contact Fiona at The Limbs 4 Kids Information Sessions, regarding [email protected] or program will offer: information and issues that 1300 782 231 (toll free). matter to you, will be offered and A new Limbs 4 Kids website. presentations will be uploaded to Don’t try to be what This website will offer specific the Limbs 4 Kids website. you think the world information, videos, event calendar and publications for Research. We are partnering wants you to be. carers, children, young people again with Monash University Instead, be yourself and health professionals. who will evaluate the Limbs 4 Kids program and will provide and the world will A new Limbs 4 Kids online opportunities for you to take part come to you forum. A private forum that will in anonymous consultations and allow young people (16+) and surveys. carers to stay in touch with one another and create a supportive Limbs 4 Life is grateful to nib online community. foundation for their ongoing support! Thrive the new Limbs 4 Kids Newsletter. A quarterly newsletter that will share personal stories and information 2 3 is as it was the day I was born whole, my school friends were physically. Football allowed me doing my own thing that I never and I can do anything that anyone fine about my leg and hand – they to gain respect and challenge any really had much time to think else can do despite the fact I am just treated me like any other kid. negative comments made about about relationships and how they missing fingers! I do remember that there were my disability. Just because I was might work. The only time I ever a couple of kids at school who “that kid with the wooden leg” felt uneasy about girls was when When I was growing up there could be a little nasty at times didn’t mean that I ever expected I was about 15. I went to an wasn’t any community support which did hurt, but I learned how any favours. I wanted, and all-boys school and attended a available to amputees. The only to deal with it. Joking sometimes needed, to work for it. The more social dance with the local all-girls times I ever saw amputees was helped and when I was young respect I earned the better I felt school. It was during a dance that when I went to the Limb Centre (and even today) I told many jokes about myself and the less different a girl reached out to hold my hand and I never saw or met anyone or stories to explain my “missing I felt. They say sport is the great and screamed! It did make me feel my age there. It wasn’t until I was leg”. “A shark took my foot”, “it leveller and in my case it couldn’t uneasy at the time and I’m sure in my early 40s before I actually was eaten by ants” and “I stepped have been more true. It was only it was difficult for her also as my met and chatted with another in a hole and my foot never came when I got older that I found out hand difference was a complete amputee. I’m so glad that now out” were probably amongst the a lot of my school and sports surprise to her. But like all things all children with limb differences most popular stories I shared with friends used me as an inspiration I got over it and I learned not to have a chance to meet someone peers, adults and strangers. for some of the things they have hide my limb differences. like themself when they are young achieved in life. I didn’t know and, as happened to me, don’t I’m a sports fanatic and I found that back then and, while I feel Meeting my wife Ruth was the have to wait decades for that to that playing sport meant I could proud about the effect I had on best thing that has ever happened happen. compete against my peers and them, it does make me feel a little to me. She was never fussed achieve success. I loved to win, embarrassed saying it publicly! about my leg or hand and was Growing up as a young amputee, but for me winning wasn’t always able to see the person inside and my family didn’t treat me any about beating the opposition it Being an amputee hasn’t held taught me to do the same. differently to my other siblings. was about me performing to the me back in life at all. I’ve played My parents allowed me to try new best of my ability. Football was many sports, been married to my I never had to explain my limb things and were always there to my passion (still is!) and it gave wonderful wife Ruth for decades, differences to my sons. My kids help me along the way. On the me the opportunity to compete have two amazing sons, pursued have grown up with it and to them a variety of careers and I’ve it’s completely normal. I never had travelled extensively. to sit them down and say “ok guys this is what happened”, instead As a kid sport was my recreation, their understanding just evolved supermarket.