The Finley Newell Fund
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LOTS OF UPDATES DOWN BELOW! Click on latest updates at the end of this story to see 'what's occuring!'
Finley was born on the 25th May 2013 and we were delighted to have a beautiful healthy baby brother to join our 12 year old son Kyle and complete our family. At the age of 9 months we began to realise that Finley wasn't developing as he should-he was reluctant to place his feet on surfaces to stand and would not raise his head when in tummy time. We raised our concerns with the GP and at 13 months old we received a life changing diagnosis that Finley had a genetic condition called Spinal Muscular Atrophy Type 2. I gave up my post as a Community Nurse in order to become a full time mummy and carer. Sometimes we have up to 4 appointments a week with various health professionals and the emotional pressure of learning my child was severely disabled with a potentially life limiting condition brought me to the end of my career.
Spinal Muscular Atrophy (SMA) Type 2, is a progressive neuromuscular condition that means Finley will never crawl or walk and will be reliant upon various equipment for mobility. SMA affects Finleys arms, hands, head , neck, breathing and swallowing-all of these muscles are weakened leaving him extremely susceptible to serious chest infections. Please see the wonderful charity www.smasupportuk.org.uk for more details of the condition. It is equally as important for us to raise awareness of this condition that affects a minority of people but has a huge impact upon lives.
Finley is lucky enough to have been loaned a Wizzy bug (courtesy of Designability) which is essentially a trainer powerchair-he has mastered it very quickly as he is a very bright button! We would love to be able to provide him with an 'all singing all dancing' Permobil Koala powerchair that would enable him to raise up and down down and whizz about to interact with his peers. Partial grants may be available to help us purchase this £15,000 piece of equipment but throughout Finleys life he will need all kinds of equipment some which will be unavailable on the NHS.
We are having to renovate and extend our small family terraced home in Haddenham to make it wheelchair accessible and we have applied for a Disabled Facilities Grant (DFG) to help with these monumental costs-a through the floor lift alone is £12,000. We will also require a vehicle that enables us to transport Finley in his power chair, we are looking into the Motability Scheme that we can access when Finley turns 3.
Our aim is to give Finley a life without limitations and we would love to be able to find uncoventional solutions to problems so that he can live a fullfilled life. He recently watched his brother climb a tree and was shouting 'me, me, me' so a few days later we took him to a park and held him supported on a branch in a tree with Kyle and his smile was priceless. He is a bit of a daredevil and I wanted him to experience being a passenger on a bicycle but knew it would be difficult to place him on a normal bike due to his hypotonia (floppiness). I scoured second hand adverts to find an adult tricycle that could be adapted to seat Finley on the back so we could go for bike rides together, his reaction 'weeeeee mummy, more, again'! Small things are exceedingly special and we love seeing him enjoy himself.
We have an exceptionally happy, gorgeous fun loving little boy and we would love this sunny disposition to continue into his life. Imagination will help us so far but unfortunately we will require money to enable Finley to live comfortably in an able world. It is for this reason that we have joined GoFundMe....if you are able to donate even a small amount we would be eternally grateful. We will also be holding various fundrai
sing events to raise money for SMA Support UK and for The Finley Newell Mobility and Equipment Fund. I will keep details of these posted.
Finley's blog page is under construction on Facebook. It features information about Spinal Muscular Atrophy, events and some cute pictures and video's showing you what we have been getting up to. Visit it on Facebook by searching for 'The Finley Newell Mobility and Equipment Fund' and if possible like us!
Many many thanks from Rosie, Joel, Kyle and Finny x
Finley was born on the 25th May 2013 and we were delighted to have a beautiful healthy baby brother to join our 12 year old son Kyle and complete our family. At the age of 9 months we began to realise that Finley wasn't developing as he should-he was reluctant to place his feet on surfaces to stand and would not raise his head when in tummy time. We raised our concerns with the GP and at 13 months old we received a life changing diagnosis that Finley had a genetic condition called Spinal Muscular Atrophy Type 2. I gave up my post as a Community Nurse in order to become a full time mummy and carer. Sometimes we have up to 4 appointments a week with various health professionals and the emotional pressure of learning my child was severely disabled with a potentially life limiting condition brought me to the end of my career.
Spinal Muscular Atrophy (SMA) Type 2, is a progressive neuromuscular condition that means Finley will never crawl or walk and will be reliant upon various equipment for mobility. SMA affects Finleys arms, hands, head , neck, breathing and swallowing-all of these muscles are weakened leaving him extremely susceptible to serious chest infections. Please see the wonderful charity www.smasupportuk.org.uk for more details of the condition. It is equally as important for us to raise awareness of this condition that affects a minority of people but has a huge impact upon lives.
Finley is lucky enough to have been loaned a Wizzy bug (courtesy of Designability) which is essentially a trainer powerchair-he has mastered it very quickly as he is a very bright button! We would love to be able to provide him with an 'all singing all dancing' Permobil Koala powerchair that would enable him to raise up and down down and whizz about to interact with his peers. Partial grants may be available to help us purchase this £15,000 piece of equipment but throughout Finleys life he will need all kinds of equipment some which will be unavailable on the NHS.
We are having to renovate and extend our small family terraced home in Haddenham to make it wheelchair accessible and we have applied for a Disabled Facilities Grant (DFG) to help with these monumental costs-a through the floor lift alone is £12,000. We will also require a vehicle that enables us to transport Finley in his power chair, we are looking into the Motability Scheme that we can access when Finley turns 3.
Our aim is to give Finley a life without limitations and we would love to be able to find uncoventional solutions to problems so that he can live a fullfilled life. He recently watched his brother climb a tree and was shouting 'me, me, me' so a few days later we took him to a park and held him supported on a branch in a tree with Kyle and his smile was priceless. He is a bit of a daredevil and I wanted him to experience being a passenger on a bicycle but knew it would be difficult to place him on a normal bike due to his hypotonia (floppiness). I scoured second hand adverts to find an adult tricycle that could be adapted to seat Finley on the back so we could go for bike rides together, his reaction 'weeeeee mummy, more, again'! Small things are exceedingly special and we love seeing him enjoy himself.
We have an exceptionally happy, gorgeous fun loving little boy and we would love this sunny disposition to continue into his life. Imagination will help us so far but unfortunately we will require money to enable Finley to live comfortably in an able world. It is for this reason that we have joined GoFundMe....if you are able to donate even a small amount we would be eternally grateful. We will also be holding various fundrai
sing events to raise money for SMA Support UK and for The Finley Newell Mobility and Equipment Fund. I will keep details of these posted.
Finley's blog page is under construction on Facebook. It features information about Spinal Muscular Atrophy, events and some cute pictures and video's showing you what we have been getting up to. Visit it on Facebook by searching for 'The Finley Newell Mobility and Equipment Fund' and if possible like us!
Many many thanks from Rosie, Joel, Kyle and Finny x
Organizer
Rosie Davies
Organizer
