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Denis Barry & James Connolly raised £3,545 from 40 supporters
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Closed 15/07/2017
Weʼve raised £3,545 to Help James's nephew Harry Worrell receive Spinraza treatment in the USA. He has SMA and Spinraza will help prevent muscle deterioration.
- Potters Bar, United Kingdom
- Funded on Saturday, 15th July 2017
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Story
We have decided to start spinning for Spinraza! After not being on a bike since our teenage years, We are taking on the challenge of cycling the Ring of Kerry in Ireland. This is a 112 Mile cycle where we will not only have to face the rough and hilly terrain but also the Irish weather!
We are taking on this challenge in support of James's amazing nephew Harry Worrell. He shows strength and courage every day of his life as a 12 year old boy with a degenerative genetic motor neurone disease called Spinal Muscular Atrophy Type 3.
Harry uses a power wheelchair as he can only walk very short distances and he is too weak to self propel in a manual wheelchair. Spinal Muscular Atrophy causes progressive muscle weakness & motor function degeneration which causes the loss of abilities. Doctors have told us that, without treatment, Harry would most likely completely lose the ability to walk by age 14.
Spinraza/nusinersen has become available in America to treat Spinal Muscular Atrophy. With treatment Harry's muscle will not deteriorate and could even improve his abilities. This treatment is not available in the U.K. & the NHS will NOT fund any of his treatment. This is a very invasive treatment where Harry needs to be anaesthetised to have the drug administered into his cerebral spinal fluid by injection every 4 months.
Harry is a beautiful, kind, funny & exceptionally clever little boy. Please help me to help Harry live an independent & happy life.
THANK YOU
Updates
1
Updates appear here
- 7 years ago
Denis Barry & James Connolly
7 years agoThank you to everyone for your support over the past few weeks! We made it round without the luck of the weather ..... however with great team spirit and fantastic atmosphere throughout the day. Good luck to harry with his treatment.
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Supporters
40
The Scully's
Jul 10, 2017
Well Done Denis & James! Great achievement....
£100.00
Helen Lynch
Jul 5, 2017
Well done! Xx
£20.00
michael angland
Jul 2, 2017
Good luck lads. Hope it all goes well.
£20.00
Sandra Small
Jul 2, 2017
Well done Denis xLove Sandra, Andrew, Erin and Callum x
£20.00
wesley gaughan
Jul 1, 2017
Fair play lads
£100.00
Michael O'Donoghue
Jul 1, 2017
Best of luck Denis and James. A great cause!!
£100.00
Davina Worrell
Jul 1, 2017
Good luck James & Denis
£100.00
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