Can I ask you - How would you like to wake up every day with a black cloud over you?I wake up every day feeling like this, hoping and praying that enough money can be found for research into a cure for Huntington's disease. So let me tell you what Huntington's disease is. It is a genetic disease inherited from either your father or your mother. In my case it has affected my father's side of the family. my grandmother died of it as did her sister. my father's cousin died of a heart attack, although he also carried the gene. There is now a test that you can have to see if you have the faulty gene, but you have to be over eighteen. So you see what a cloud I live under, not knowing.
The disease starts in the deepest part of the brain called the cortex and therefore the hardest part to get to or ever be able to treat. If you break a bone it mends, if you cut yourself it heals, but Huntington's brain cells cannot repair themselves. Signs of the start of Huntington's disease are twitching. looking as though you are a little drunk, dropping things and becoming very careless. Gradually you lose the ability to walk or look after yourself and eventually are unable to speak or communicate.
From what I have told you, you see why money is needed for scientists to carry out research into Huntington's disease and, hopefully, to find a cure or prevention of the disease. That is why between the 11th and 17th of October is Huntington's Disease Awareness Week when newspapers, television and other media will tell everyone about the disease. So that, hopefully, people will donate money into the research needed, but at the moment there is no cure and we have to live with the dreadful uncertainty, knowing that in today's modern scientific world the answers lie out there - waiting - but when will they be found? No one knows.
So you see why we cannot live like the rest of you - living today and expecting a good tomorrow. We know Huntington's disease means a slow cruel death at any age.
Anna, aged 11
