In its 40th year, I am taking part in Belfast City Marathon, all 26.2 miles of it. It is in memory of a really special person, my Godfather, Pat Hesketh and for an amazing charity, Huntington's Disease NI. I may well crawl over the finish line, but I made a promise to Pat and it's a promise I intend to keep.
Like many children, I had a very close relationship with my Godfather - he was a really special person who inspired me so much. He loved to read, loved his culture, and loved his family, and we him. Unfortunately before his 40th birthday, Pat was diagnosed with Huntington's Disease.
Huntington's Disease is described as disease of families, a genetic condition, affecting all in the family, even those without the gene. Huntington's is a neuro degenerative disease which causes deterioration physically, emotionally, and cognitively. We were very lucky that Pat was able to stay at home for many years before the deterioration in his condition meant that he needed residential care. The wonderful staff in Our Lady's Home cared for and loved Pat like one of their own until he passed away aged 53 on 8th August 2020. I never once heard Pat complain about his situation even though Huntington’s gradually robbed him of the ability to do anything himself including talking with family and friends.
I hate that Pat had Huntington's and had to suffer with such a horrible disease. That's why I'm raising money for Huntington's Disease NI, a charity that supports families affected by Huntington's Disease here in NI. They do amazing work for families during some really difficult times. Not only that, they advocate for the best and effective care for our loved ones who have the disease. A disease that currently has no cure.
Pat once wrote in a birthday card to me, "Thank you for being you"; no Pat, thank you for being you.
Please give whatever you can, helping me fulfill to my promise to run the marathon, raise awareness of Huntington's and funds for Huntington's Disease NI.
