Rach’s run for Rare Diseases and Intellectual Disabilities
Rach
My Story
I am a lucky mum of two lovely boys. Our eldest Mikey, has Coffin Siris Syndrome (CSS), a rare genetic condition that leads to complex, multiple severe disabilities. Mikey's biggest challenge is Intellectual Disability, which means he struggles to understand, communicate and participate in everyday activities. He also has physical disabilities that affect his strength, co-ordination and balance. Everything is harder for Mikey from brushing his teeth to playing his beloved football!
Navigating life with a family member who has a rare condition, that is poorly understood, is incredibly complex. From the moment Mikey stopped breathing at six hours old (due to muscle weakness) we knew something was wrong and entered a whole new world. Five and a half years later he was diagnosed with CSS. The Gene People support and provide information for families like ours, before and after diagnosis.
Sport is a huge part of Mikey's life and playing PAN disability football with Burton Albion Community Trust is his greatest passion. He also joins me on a run sometimes. By running the London marathon I hope to show Mikey that anything is possible - even running your first marathon well into your 50s..... My Dad ran the first London marathon in 1981 and many more after that, so I am hoping it's in my genes!
I would love it if you could sponsor me and support the Gene People in helping more families like ours. I would also love it if we could start more conversations about Intellectual Disability. Google it, ask questions, be brave like Mikey!
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Target
£5,000
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Raised so far
£10.4K
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Number of donors
209
My Story
I am a lucky mum of two lovely boys. Our eldest Mikey, has Coffin Siris Syndrome (CSS), a rare genetic condition that leads to complex, multiple severe disabilities. Mikey's biggest challenge is Intellectual Disability, which means he struggles to understand, communicate and participate in everyday activities. He also has physical disabilities that affect his strength, co-ordination and balance. Everything is harder for Mikey from brushing his teeth to playing his beloved football!
Navigating life with a family member who has a rare condition, that is poorly understood, is incredibly complex. From the moment Mikey stopped breathing at six hours old (due to muscle weakness) we knew something was wrong and entered a whole new world. Five and a half years later he was diagnosed with CSS. The Gene People support and provide information for families like ours, before and after diagnosis.
Sport is a huge part of Mikey's life and playing PAN disability football with Burton Albion Community Trust is his greatest passion. He also joins me on a run sometimes. By running the London marathon I hope to show Mikey that anything is possible - even running your first marathon well into your 50s..... My Dad ran the first London marathon in 1981 and many more after that, so I am hoping it's in my genes!
I would love it if you could sponsor me and support the Gene People in helping more families like ours. I would also love it if we could start more conversations about Intellectual Disability. Google it, ask questions, be brave like Mikey!
