Cuddington | Buckinghamshire

The Finley Newell Mobility & Equipment Fund

Finley Newell is the grandson of Liz and Steve Davies of Bridgeway, Cuddington.  Many of you will know Rosie, his Mum, and will have watched her growing up in the village.

At 13 months, Finley was diagnosed with Spinal Muscular Atrophy (SMA) Type 2, a progressive neuromuscular disease.  Finley will never crawl or walk and cannot stand.  There is weakness in his arms, hands, head and neck.  He is unable to swallow and his respiratory muscles are also affected leaving him vulnerable to serious chest infections resulting in emergency hospital admissions.

But for all this, he is a bright and happy 5-year-old with a huge zest for life who drives himself to mainstream school in his powered wheelchair.

Living in Haddenham, he and his family try to live as normally as possible, but this cannot be done without specialised equipment and therapies beyond the realms of the NHS.  It is for this reason that the Finley Newell Mobility & Equipment Fund was set up to fund ongoing equipment, therapy and mobility costs.  

From time to time, fundraising events are held.

If you would like to know more about SMA, visit www.smasupportuk.org.uk, a national charity supporting and empowering those affected by Spinal Muscular Atrophy.

More information about Finley can be found on Finley’s Facebook page, here.

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Benefit Gig for Finley Newell

The SkaSouls will be playing a benefit gig for Finley at the Rivets Sports and Social Club, Whitehead Way, Aylesbury HP21 8AD on Saturday 3rd November, from 7.30 pm until midnight. 

The SkaSouls are a seven-piece ska, reggae and 2-tone band playing original material along with Trojan reggae and covers of songs by Madness, The Specials and Bad Manners.  Finley’s father, Joel, plays saxophone with the band.

There will be a licensed bar and a raffle, and all proceeds will go to the Finley Newell Mobility & Equipment Fund.

Tickets are £10 per person: click “Book Now” below.

Enquiries to Liz Davies, telephone 01844 299 150.  Our grateful thanks go to Rivets for hosting this event.

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Finley Newell on Sky News

In August we appeared live with another family on Sky News.  We at TreatSMA are trying to raise awareness of SMA and are campaigning for access to the drug Spinraza/Nusinersen – a medically proven treatment that has initially been declined by NICE (National Institute of Clinical Excellence).

Please watch the Sky News video here and share it with anyone who you think may be influential to our cause.  Thanks so much for reading and for your support.

In September 2018, Mary Glindon, MP for North Tyneside, raised a question to the Prime Minister on behalf of the All Party Parliamentary Group for Muscular Dystrophy about access to Spinraza on the NHS.  Watch Theresa May’s response to the question here.