Mum to run Derby half-marathon while pushing daughter
A mother is set to run a half-marathon while pushing her 24-year old-daughter who has a rare and life-limiting condition.Alice Lee, from Alfreton, Derbyshire, was born with a CASK gene mutation, a condition that cannot be treated or cured and causes her to have epilepsy, severe visual impairment and no ability to eat or drink.Joanne Lee hopes to complete the 13.1-mile (21km) Derby Ramathon on Sunday, with Alice in a running wheelchair, to raise money for a charity dedicated to finding a cure for her daughter's condition."We know there's no fix for Alice but halting or slowing the loss of skills could make all the difference," the 51-year-old said.
CASK is the name of a gene that is essential for healthy development of the brain, said the CASK Research Foundation, and mutations can cause a range of disorders affecting brain function. Alice was 12 when her condition was diagnosed and Joanne said she had decided to stop working so she could focus on looking after her full-time."Since she was little, she has lost skills such as walking and we don't know how long her life would be, so I decided I wanted to finish work," she said.The move has enabled Joanne to run with Alice four times a week while pushing her in a special running wheelchair costing £4,500.
'Place she belongs'
Joanne said her daughter was the reason she started running and they both loved their new hobby."I needed to stay fit to be able to lift her and give her the life she deserves, but I also wanted something we could do together that fit around full-time work," she said."We started running when Alice was 16 and I never imagined how much she would love it, or how incredibly welcoming the running world would be."In a world where inclusion for adults with complex needs is pretty rubbish, running has given Alice a place where she belongs and is now a part of a community that sees her, welcomes her, and cheers her on every step of the way."Loking forward to the race on Sunday, Joanne said: "I'll be pushing Alice every mile of the way, for her, and for a future where others like her don't have to face this alone."We need to find something before it's too late."
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