The funding from the DM Thomas Foundation for Young People helped HDANI to provide a 3 day residential camp for 30 children and young adults in Northern Ireland who have a close family member with Huntington’s Disease.
HD is a terminal neuro-degenerative disease that causes gradual loss of control of behaviour, thoughts, ability, movement and to communicate and swallow. It can also cause serious psychological symptoms. These children and young people experience loss of a loved one in the changes they see every day, they can be providing informal care within their families, they can suffer social isolation and financial hardship and likely multiple bereavements. On top of all of this they face inheriting the same disease which carries a 50% risk of being passed on to each child of a HD parent.
Through HDANI’s away days and camp the children affected by the disease are ABLE to meet their peers, form friendships, enjoy fun activities without worrying about money or caring roles and access to a dedicated HD counsellor to provide information, advice and coping mechanisms aimed at building their resilience in the face of the journey ahead.