By Liz Davies - 9th October 2015 9:00am
The Finley Newell Mobility & Equipment Fund
A feast of music, a super raffle and children's fun took place recently in the gardens of The Broad Leys pub, Aylesbury. Finley's dad, Joel, organised the free concert with a wide range of sets played by supportive musician friends and he, himself, played bass with The Powders and saxophone with The Maintrees; Finley's 14 year old brother, Kyle, played drums with Scatterbrain.
As many of you know, Finley lives in Haddenham and has Spinal Muscular Atrophy (SMA) Type 2, a rare genetic condition leaving him unable to walk or crawl. He is, and will be, reliant on varied equipment to improve his quality of life, most importantly for mobility and standing / sitting support. He is a bright and sociable little boy who has a great love of life. A top of the range Permobil Koala powerchair at a cost of £15,000 will give Finley greater scope to interact with his peer friends at mainstream playgroup and school. Happily, this amount has already been realised and is at the ready to buy the powerchair next year.
But the family, apart from the angst of the whole situation, are having also to face the cost of extending and modifying their small mid-terraced home to make it wheelchair friendly and to accommodate Finley's equipment. Grants will be available for the through-floor lift and specialised bathroom fittings but all building costs and related expenses will fall upon the family.
With this in mind, we are spurring on with fundraising. The sunny afternoon with excellent music line-up at The Broad Leys attracted a happy generous crowd who helped to raise a further £2,300 for the fund. Finley and his Mum, Rosie, were unable to be there as the little chap was in hospital once again with respiratory problems. Happily, they came home two or three days later and, apart from extra convalescent rests, Finley is now back in the swing of things and hopes to return to Puddleducks playgroup very soon.
SMA awareness week has coincided with the World Cup rugby — the photo shows Finley supporting both events!
popular recent storiesAlso in the news
Back in December 1993 the four Chrisitian churches (Anglican, Baptist, Catholic and Methodists) in the village of Haddenham held a special service during which a covenant (a set of promises) was established. It was a service that acknowledged our differences and celebrated the unique contribution brought by each tradition. But it was also a service that acknowledged that there was more that...
We have had a very busy and successful couple of days at the Stoke Mandeville Stadium Aylesbury Vaccination Centre. Most of our clinical team from Haddenham Medical Centre have been there at some point over this time both giving vaccines and in the really tricky work of vaccine preparation.The vaccines do not come prepared like flu jabs. There is an important, but painstaking, first stage of...
Here's the latest missive from Martin Tett, Leader of Buckinghamshire Council, dated 19th January 2021:The COVID-19 vaccine programme has gathered pace since I last wrote and I wanted to update you on the latest news:Nearly 20,000 Bucks residents have now received their COVID-19 vaccineAll Buckinghamshire residents aged 80 and above will be offered a vaccine appointment through...