Thanks for taking the time to visit my JustGiving page.
My goal is to run 5k a day for the whole year. It might not sound like much but I'm sure its going to be tough! Each month I'll pick a new charity to raise money and awareness for.
For my first month of January I've chosen a charity I have only recently found. It's a charity that I could instantly relate to because the work they do would have been a huge help for my Dad.
My Dad passed away 2 years ago. He had a rare condition that affected his central nervous system. Over the course of his life he lost the use of his body until he couldn't care for himself. He died when he was only 52 years old. My mom was his primary carer his entire life. She had very little support. When we tried to get more help we were told my dad wasn't eligible. My mom's full time job was taking care of my dad. She couldn't take a day off or call in sick yet there wasn't any help for her.
The original diagnosis was of Spinocerebellar Ataxia. For most of his life we accepted this diagnosis and got on with it. As the years passed things became more difficult. The progression of the disease first took his ability to walk, then his ability to move his arms.
It was when my girlfriend and I were expecting the birth of our first child that we began to ask more questions. Spinocerebellar Ataxia is hereditary, yet myself and my brothers don't have it. Worried it may skip a generation we went looking for more answers.
We found out later dad actually didn't have Spinocerebellar Ataxia. My dad went for many tests in his life to discover what he actually had. Each test was to prove a different diagnosis and each came back negative. Even results from the 100,000 genome project have not been able to shed light on the illness that took my dads life. I wish we had known about the work Rare Disease UK, SWAN and the Genetics Alliance did while he was still alive. We may not have gotten the answers we were looking for. But, I know how valuable their support and help would have been to us.
I have seen first hand how difficult it is to live with a disease that day by day, little by little, takes away a life. It is gruelling for the person suffering, but also a strain on a family. It's a hardship that families shouldn't have to go through alone. It is estimated that 6000 children per year are born with a syndrome without a name. We never knew about Genetic Alliance UK and the work they do for families suffering with a rare disease. I want to raise awareness and money for this fantastic charity, the work they do, and the families they help. By raising awareness of undiagnosed diseases SWAN UK is making a difference for young families. They create the support networks that are vital to those families.
Thanks. Take care and love each other.