2009 heralded the 5th Juvenile Huntington’s Disease (JHD) weekend. JHD is a very rare form of a very rare illness affecting about 70 children in the UK. The weekend aims to offer three different things: firstly the opportunity for parents to meet with other parents who have children with the illness, to learn more about the illness, and to develop mechanisms to cope. Secondly for children affected by JHD to meet others in a similar situation, and to enable them to participate in activities that they would normally be excluded from, thereby providing them and their families with lasting memories. Also the siblings of these children often live in the shadow of their poorly brother/sister, with little attention paid to them despite being equally at risk of developing the illness. The JHD weekend provides them the opportunity to have fun, be a child, and ask any questions they may have.

Perhaps the best way to provide insight into the impact of the weekend is to view it from the perspective of two children who are affected by JHD. Tom (we’ll call him) is 16. His symptoms are predominantly behavioural; he was a challenge to the leaders for the weekend. He then talks about his life; he was, prior to diagnosis, deemed academically gifted and talented. Once he started failing at school, life at school became very unpleasant, and he was accused of throwing everything away – something he couldn’t understand as he knew he was trying very hard. This was coupled with the fact that he was athletically gifted, being county champion at several running events. Suddenly he could not achieve this any longer. Watching Tom attempting to have the coordination necessary to perform archery, and challenging his enthusiasm positively, serves as a reminder in a society quick to judge.

Tom's brother, Ben, had completely different problems. He lacked confidence to participate in anything and required constant encouragement and motivation being quiet and withdrawn... but once you could engage, if you could bottle up his giggle and laugh... you would make a fortune. Enabling him to succeed at abseiling, despite his extreme fear, and watching his delight, was an irreplaceable moment. Again, Ben was a county champion at swimming, something of which the illness had robbed him. Ben hugged me as he left the weekend, crying, and said it was the first time he had felt "normal" for two years.

Finally a comment from a parent as they left "...Thanks for another great weekend. I know that everyone benefits from going, I don’t know if you realise how much. It is not just the families that are special; it’s also people like yourself and all your team, amazing, dedicated people..."

A grant from BWCF provides the opportunity for the Huntington’s Disease Association to run the weekend for 3 years.