We are parents whose daughter, Sarah, passed away from Huntington's Disease on 17th October 2016. We run a small charity called 'Sarah's Dream'. All money collected is ultimately passed directly to The Huntington's Disease Association of Great Britain. We cover any expenses from our own pocket. We started in October 2015.
Sarah's Dream is our 1800 Goldwing motorcycle which we use to raise funds, as Sarah had a great love for motorcycles.
We have just completed our second Christmas of visiting children at home (Jeff - Santa Claus. Gail - Mrs Claus) and we have the motorcycle lit up with hundreds of multi-coloured lights.
Huntington's Disease (HD) and Juvenile Huntington's Disease (JHD) is a devastating, hereditary illness. It is comparable to suffering Motor Neurone Disease, Parkinson's Disease and Alzheimer's Disease all at the same time.
THERE IS NO CURE OR TREATMENT AND IT ALWAYS ENDS IN DEATH.
We need a cure, but also help and support for the families who have to live with this terrible disease.
As I mentioned before, it is a hereditary illness, so the children of any parent suffering from HD have a 50/50 risk of inheriting either HD or JHD. The onset of JHD can be as young as 4 or 5, so no sooner have they learned to walk and talk and eat, they start to lose those abilities at the onset until they, also are helpless and death is the only outcome.
My daughter died at the age of 37, lying in a bed in a nursing home where she had been for over 5 years. She was unable to walk, talk, eat (fed entirely by tube directly into her stomach) and had no co-ordination. Her brain was gradually being destroyed and eaten away. It is like being a prisoner in ones own body.
We strive to raise awareness, a cure, and help and support for those suffering and their families.