Summer camp gives me time away where I can talk to people who understand. Sometimes it feels as though we are the only family dealing with it. When we go to camp, that feeling goes away. I realise it is not only us – there are lots of other people who have the same feelings as we do.” - Harry.
Harry, 13 and Bella-Rose, 12 have both been impacted by Huntington’s disease since they were young. Their dad, Stu was diagnosed in 2017 and is cared for by their mum Hannah. Both Harry and Bella-Rose are also young carers for their dad and help with his daily needs. Due to the hereditary nature of the disease, they are sadly both at risk of Huntington’s.
The Huntington’s Youth Engagement Service (HDYES) has provided support for Harry and Bella Rose since they were eight years’ old, which has been a lifeline for Hannah and Stu. “Having our Youth Worker, Jack as a dependable professional, who is also fun, young and able to support their emotional wellbeing in relation to Huntington’s disease, is incredible. I cannot thank Jack enough,” says Hannah. Jack heled to explain to Harry and Bella Rose about how Huntington’s would affect their dad and about the genetics of the disease. “He told them about their 50:50 risk and in such a compassionate and caring way that now neither of my children feels scared of what might come in their future,” Hannah continues.
Our Youth Engagement service has been supported by funding from The National Lottery Community fund for the last three years. This grant has now ended.
The funding meant that we could run an annual summer camp, which allows young people to have a break from their caring responsibilities, meet other young people who are in a similar situation to them while allowing them to have fun and be children. “For lots of young people growing up in a family affected by Huntington’s, our camps are a place where they do not have to explain themselves. Many young people have caring responsibilities at home, or stressful home lives, which can be quite isolating. Summer camp gives Harry, Bella Rose and others a space to simply be young people, try new activities and make friends,” says Youth Worker, Jack.
The summer camp provides the young people with a wide range of activities including high ropes, archery and teambuilding. They also have free time to take part in craft activities or sports such as football, as well as the chance to spend time talking and getting to know to one another. Bella Rose tells us:
My favourite thing is that, when you go there, you can literally be yourself and no one is going to judge you. You can ask anyone anything and they will be able to answer you. Everyone there is really supportive and kind. It is just a really fun time.
Harry tells us:
I get to spend time with other people who actually understand what we go through. I get to make friends with them, find out who in their family has Huntington’s disease and relate to them.
We can only deliver our HDYES summer camp 2027 with your support.
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. Harry says:
I would be very upset without camp because I would not be able to see the friends I have made in the past. Summer camp gives me time away where I can talk to people who understand. I would not be able to get that anywhere else. Where I live, I do not know anyone else affected by it.
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.
