As hard as having a connection to Huntington’s can be, there are certain things that make it bearable. One of the biggest things to make that difference is the support, friendship, and feeling of community provided by the Young Carer’s programs provided by Huntington’s associations around Australia.
Having a parent (or both) who are disabled can change who you think you are, making you feel inherently different to “normal” kids. It also meant that for some of us, the chance to do simple things like go the movies, or dinners out, didn’t come up.
Youth groups like those run by Huntington’s WA became the opportunity to do “normal” kid things. Activities that we were offered included things such as camping in Fremantle and Mandurah, days at the movies, trips to Rottnest and laser tag. We had the chance to be friends with people who were like us, who could understand what it was that made us different.
The greatest thing about these outings was that they weren’t about Huntington’s. We didn’t go to lunch to talk about diagnosis, or treatment, or the scary “what if?” waiting for us at 18. Of course, there was plenty of opportunity to discuss the matters that concerned us about our parents. But when we did, it wasn’t making us different. It was making us part of the group.
The Huntington’s WA Youth group didn’t just offer us that freedom and belonging at the same time. They empowered us by offering information and training that we couldn’t have accessed otherwise. When I asked to be taught first-aid, we were offered the chance to participate in a St John’s First Aid certificate. We had information days about youth-related issues that were run based on the concerns we bought up while out and about.
Through my interaction with the staff I was offered the chance to attend conferences and serve on the board as a Youth Member, as well as speak at a National Huntington’s conference.
All of this wouldn't have been possible without the staff at Huntington’s WA, of course. The team of youth coordinators who have worked with Huntington’s have made it look easy to coordinate youth members and activities, as well as individual home visits for those too far out to attend. Not to mention, they have carried a great responsibility with care and grace.
When dealing with a group of young people, uncertain about their futures, it takes a special sort of person to be able to offer a package of hope, understanding, concern, and happiness.
Thanks Sophie for sharing. Community members’ stories are always welcome. If you have a story that you'd like to share with the community, anonymously or otherwise, please contact email@example.com
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