We did it!
Charles Robson raised £829 from 71 supporters
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Closed 03/06/2021
Weʼve raised £829 to raise money towards Edward’s lifesaving treatment which is only available in America!
- Funded on Thursday, 3rd June 2021
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Story
I really like running and I do the daily mile at school. I am going to run 4 miles on the 13th March to raise money for Edward’s lifesaving treatment!
Edward xis my childminder’s nephew. Keeley was the best childminder when i was little and i used to call her Kiwi as I couldn’t say her name properly! I spent a lot of time with Kiwi when mumma was at work.
Edward was born on 7th September 2020 and has been diagnosed with Spinal Muscular Atrophy (SMA) type 1.
Spinal Muscular Atrophy (SMA) is a rare, genetic neuromuscular condition causing progressive muscle wasting (atrophy) and weakness leading to loss of movement.
We live in the UK and there is a new life saving treatment available in America called Zolgensma. I would like to raise money to help.
from Charles
Updates
14
3 years agoCharles Robson
3 years agohttps://www.bbc.co.uk/news/uk-england-essex-56334334 Edward’s mummy and daddy spoke to BBC News about Zolgensma now being available in the U.K. and the disappointing news that Edward isn’t eligible.
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- 3 years ago
Charles Robson
3 years agoEdward’s case will be taken to a multidisciplinary team for consideration for this treatment in the U.K. 🤞 Thank you for all of your support for Charles and we will continue to fundraise for this little dude as sadly nothing has changed yet
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- 3 years ago
Charles Robson
3 years agoHi Guys, You may have seen on the news that the drug we have been fundraising for, Zolgensma, has been approved by NHS England for children in the U.K. with SMA Type 1. This is fantastic news as you can all imagine, until you read the small print. The NICE guidelines recommend this drug for any child under 12 months with SMA Type 1 who has not started any other treatment. Edward has been started on spinraza to slow down the disease progression, therefore he is not eligible. .
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Charles Robson started crowdfunding
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Supporters
71
Charlie & Joanna
Mar 13, 2021
Well done Charles!!!
£20.00
Ann-Marie Thompson (Isaac's auntie) and family.
Mar 13, 2021
Well done Charles!
£10.00
Liz (Isaac's grandma)
Mar 13, 2021
Well done Charles! What a lovely thing to do!
£10.00
Mat
Mar 13, 2021
£10.00
Ashley
Mar 13, 2021
Fantastic, amazing, what a lad!
£5.00
Sarah, Pat, Isaac and Lewis xx
Mar 13, 2021
Seeing you running with such a big smile on your face today in this awful cold windy weather I just had to give you more! Well done Charles! ❤️
£10.00
Georgia
Mar 13, 2021
Go on Charles!! Xx
£5.00
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