100km Swim for Huntingtons

Hi Eleanor,

Not really a question but wanted to let you know how moved I was when reading your story. My father was diagnosed years ago with Huntington's disease when very little was known about it. It was kept from us as children ( with best intention) and I was only told I was at risk at around the age of 18. Fortunately for me I had a good test result but not before I had struggled with the worry for about 18 years. Sadly my siblings have not been so fortunate, I had twin sisters Emma and Sam who were identical so obviously if one carried the gene so did the other. Sam passed away over ten years ago now but Emma is in care on the South Coast of England. My brother Nick is in a half way care home now. He was much younger than us. My poor mother has endured this for so long now and like you I cannot get back to England to spend time with her. There is no doubt here in NZ we live in the best place in the world but family is family. Hopefully this year I can get back. My brother's name was put forward for the new ground breaking therapy/treatment but he felt he was not going to be capable to do it so he opted out. Is that an option you are hoping for? My best wishes go out to you, keep strong, your story was so inspiring and I will be sending a donation to you later this week. I have a friend who keeps urging me to write a book of our story as a family which has been pretty incredible, at this stage I have written the first chapter but have become a bit lost, hopefully your story will galvanize me to kickstart the story once again. Best wishes, Alistair Hargrove