I am raising funds for Muscular Dystrophy UK. Eighteen years ago, my cousin was very excited about having her first baby. However, when her daughter Loes was born that excitement turned to worry as Loes was not the happy healthy baby our family had hoped for. She had trouble breathing, lied floppy in her cot, and needed surgery in just her first week. It took over a year of anxious hospital visits, inconclusive tests and referrals before we learned of a condition called 'Steinert's disease' for the first time.
A diagnosis finally brought some hope, but not the relief we expected as it turned out this condition was both untreatable and inherited. It's a doubly cruel disease in that it's not just something that is passed along from my grandma to my aunt, cousin and her daughter Loes, but a condition that gets more severe every time it's passed on - symptoms start at a younger age in each generation. My cousin and aunt hadn't even started to show symptoms when Loes was diagnosed, but in a short few years our previously active family was wasting away from a rare progressive muscle weakness disease.
At the moment, there are no treatments for Steinert's disease. However, Muscular Dystrophy UK sponsors research into these rare conditions which gives families like mine hope.
Many fundraising events involve some big active achievements like running marathon. Those aren't options for many members of my family due to this condition. To make up for that, I'll be riding 500km (just over 12 marathons) in one go at Herne Hill Velodrome, outdoors, in the middle of winter. Also raising funds for our amazing little community that's become my second family and is there for everyone from little kids to seasoned veterans and everyone in between.
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