Potters Bar mum fundraising for ‘miracle’ drug to help disabled son
PUBLISHED: 07:00 18 January 2017 | UPDATED: 11:45 18 January 2017
Danny Loo Photography 2017
A Potters Bar mum is frantically fundraising to get her disabled son a “miracle” treatment.
Eleven-year-old Harry Worrell was diagnosed with Spinal Muscular Atrophy aged three – a degenerative disease that has left him virtually wheelchair bound.
Until recently little could be done to combat SMA, which is passed on hereditarily and causes the muscles to continuously shrink and weaken.
Mum Joanne, of The Drive, said it was “heartbreaking” knowing that Harry’s condition would only worsen, but a revolutionary treatment approved in December has now given the family hope.
She told the Potters Bar Edition: “It will be our dream come true, the miracle that we never thought we had, the chance for us as parents not to watch him have his last walk or jump.
“To watch your son deteriorate and not be able to do anything about it, that’s the worst thing, not knowing how quickly it will happen but knowing it will because it’s degenerative.”
The treatment is only available in America and involves the drug being administered into the spine every four months – costing £100k each time.
Joanne, 38, knows it will be practically impossible to raise the money outright, but is hoping to get enough for a consultation where the family could come to an agreement.
She added: “Thinking is this the last time he’s going to walk, or stand, or cut up his food – no parent should have to watch their child do something for the last time, and this drug could stop that.”
The married mother-of-four said Dame Alice Owen’s pupil Harry, who wants to become a solicitor, is “articulate, bright and fiercely determined” – and admirably never complains.
“Whatever he wants to do he just goes for it,” Joanne added. “He’s extremely determined and focused, and that’s why if there is a treatment out there, how can I as his mum not try.”
For more information and to donate, go to https://www.justgiving.com/crowdfunding/sophie-worrel
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