London Marathon for Demelza

Bobby Gill

Friday 10th Jul It is really difficult for me to explain in words how much it means to me and how important and meaningful  it is for me to run The London Marathon for The Demalza Children’s Hospice but I will try . . . My beautiful cousin Bobby was born with Sanfilippo syndrome, a rare, fatal, genetic neurodegenerative disorder—often called "childhood Alzheimer's". Caused by the body's inability to break down toxic cellular waste (heparan sulfate), it leads to severe childhood dementia, developmental regression, and behavioral issues. It is inherited recessively and typically results in death in the early teens. We lost Bobby not long after his 18th birthday to this awful disease. Bobby faced every day with a smile and was so so very brave . He taught me to be brave and that you have to be grateful every day for the life you have been given. Every time life gets overwhelming I think of him and remember how brave he was . Demelza was probably the only hospice/charity that could offer respite if needed and support for my aunt, uncle & cousins and they absolutely helped in Bobbys journey . So to do this for them to raise money and awareness is the least they deserve. As I said at the start no words could ever explain how amazing Bobby and his parents are and how loved he is but hopefully through reading this you have some understanding of why this means so much Share