No one else understands what I'm going through but all of the people at camp are going through the same thing. Talking to them is so incredible for my mental wellbeing. It takes a weight off you.
Huntington's disease has been a part of Grace's life for as long as she can remember. Now 16, Grace, along with her mum and brothers, is a carer for her dad who is in the late stages of Huntington’s disease, and her brother, Thomas who has Juvenile Huntington's disease.
I have a completely different routine to others my age and caring is a very big part of my life and it's one of the main things that I do.
Grace says. Grace is a young carer, so life outside of college looks different to others her age. Her dad can’t do much for himself and her brother with Juvenile Huntington’s has a specific routine, so Grace, her mum and brothers are all involved in caring.
“I have to make sure that I do homework and look after my brother and then help my dad with things to give my older brother a break because he's been caring for my dad all day. It gets a lot, but I'm kind of in the routine,” Grace continues. It’s not just the physical support, Grace needs to manage the emotional side of the disease. “If Thomas has come home physically stressed, he need a lot of calming and I have to try to regulate him.” Grace says.
Grace first met her Youth Worker when they came to her home to explain what was happening with her dad. “We had support from Huntington’s Disease Association from quite early on,” Grace says. Some years later, Grace’s mum suggested that her and her brother went to the HDYES summer camp. Although Grace felt nervous, those feelings disappeared as she got involved with the activities at camp.
Within the first day, I had made loads of friends and everyone was so lovely. We didn't really talk about Huntington's at all until the last night - it was my first experience of talking about it to others. I didn't have to be worried about what they were going to say or not understanding it. It really bonded us all.
Our HDYES summer camp is a lifeline. Children and young people get the chance to relax and be themselves at camp. This is important when their experience of home life is different from others their age. Grace says:
There are so many positives to having a camp like this. You get to meet people in the same situation as you. I was able to have time to myself but also connecting with other people. It's such a good breather away from home - you get a break. It's just focused on us and young people having fun.
This is where the Big Give comes in. For one week, between 1 December and 8 December our donations will be doubled. We need to raise £10,500 in order to reach our £21,000 target.
If you donate £10, this will be doubled to £20, £50 would be doubled to £100 and so on. This is a great opportunity to make your money go further and help us reach our target of £21,000. If we don’t meet our campaign target, we may have to reduce or cancel our HDYES summer camp 2027. Be part of the community that makes next year's camp possible. Your support can help young people facing the challenges of Huntington's disease feel understood and less alone. Grace says:
If there was no youth camp I definitely would be without one of my biggest supports when it comes to Huntington's disease. Without it I would be feeling a lot more alone.
The Big Give Christmas Challenge
You can find out more about the Big Give below. If you want to hear from us as soon as the campaign is open, please fill out the registration form and we will be in touch on 1 December.
