Scottish Huntington’s Association Youth Project (SHAYP) has been awarded £249,708 from The National Lottery Community Fund.
The funding means SHAYP can continue to provide practical and emotional support for young people in HD families, aged from eight to 25, for a further two years.
There are around 1100 people with HD in Scotland and up to 6000 people potentially at risk, with each child of those diagnosed at 50% risk of developing the hereditary disease. There are three main groups of symptoms: changes to thinking processes (a type of early onset dementia); loss of muscle control which impacts mobility, speech and the ability to swallow; and mental illness.
People with HD may eventually lose the ability to walk, talk, eat, drink, or make decisions, and go on to need for 24-hour care.
Kirsten Walker, Senior Specialist Youth Advisor at SHAYP, said, “Growing up in a family impacted by HD is incredibly challenging. Not only does the young person have to watch their parent dramatically change and deteriorate, but often role reversal occurs with them taking on a caring role while living with the knowledge that they too could develop this devastating condition.
“As HD is not widely known about, many young people we work with tell us they often feel isolated and alone. Enabing them to meet others in the same situation is crucial to helping them cope with daily life and the ongoing changes in their parent’s condition.”
Jodi Queen, 16, knows how difficult it can be to watch a loved one live day to day with the disease as both her mum Susan and grandpa, Jim, have HD.
Jodie said: “SHAYP helps me to understand what is happening with my grandpa, to learn more about HD and know what’s wrong with him so I know how to help. It’s great coming here as it helps us to cope, share hints and tips and make friends with those who understand.”
SHA Chief Executive John Eden welcomed the funding.
He said: “Our youth team ensures young people have the right information about the condition when they need it and the opportunity to meet other young people at our groups and annual summer camp.
“Consequently Scottish young people living with HD are well informed, more resilient and less isolated and know where to get the help they need when coping with their parent’s illness or choosing to have the genetic test. We are delighted The National Lottery Community Fund has continued to support this vital work and extend our gratitude.”