The Finley Newell Fund
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
Those of you that have been following our Facebook page will have seen the marvellous progress that Finley has made and continues to make. Thought I'd give you a quick run down of how the fund money has been put to use since my last update on here.
We have his power chair now, he adores it and loves the speed on 'rocket power'! We were extremely lucky to get 70% charity funded from Caudwell Children and then used the fund money to pay the rest. We need to sort out some public liability insurance and will use our fund money to do so. He is a fabulous little driver but in this day and age you need to be covered for absolutely everything.
We have our Motability vehicle, the down payment was £5000...again a huge chunk of money but we had no worries as we were able to use his fund money again. Such an enormous weight off our shoulders. It's taken a bit of getting used to and I 'manoeuvred' it into the garage door taking out the side wing which was a bit traumatic!!!! Thankfully the Motability scheme excess was only £100 (I used my own money to pay this as felt so guilty!!!)
We have purchased a new push chair. This was just short of £3000. It handles better on all terrain with its suspension and body supports and unlike his very heavy power chair is capable of being pushed up steps for more inaccessible places. It is an essential piece of equipment as it acts as a manual chair for longer journeys when Finley gets too tired to drive.
The postural car seat is on its way, thankfully funded albeit £50 from Newlife Charity! It costs £1623!!!! When we get this we want to try and take a trip to the seaside......I cannot wait! The last time we saw the sea was when Finley was about 18months old so he will be amazed I am sure.
The last piece of equipment that we bought was a trike. This was second hand and cost £400. It makes us all beam from ear to ear when he is on it. If you haven't seen the video then I urge you to look it up on his Facebook page as I am sure it will leave you feeling happy too! He is unable to propel the pedals alone but the cycling action when the wheels turn is excellent physio for him and he also has to concentrate really hard on his head balance.
The next MASSIVE and hopefully final step for a while will be the house renovation. This needs to happen to make Finley independent within our home. It will include an extension, a through the floor lift, a wetroom, tracking ceiling hoist and garage renovation into a bedroom for big brother Kyle who is having to be shifted from upstairs to make Finley's bedroom big enough to accommodate all his equipment. We have been granted a grant from the council for £30,000 and the work is expected to be in the region of £100, 000. We will be moving out and the work will be starting this Summer and will take about 5 months to complete.
Wish us luck and thank you so very, very much for all your support past and present and let us celebrate that Finley is remaining happy and healthy. xx
Joel and I set this page up reluctantly, asking for charity has not been easy. But my goodness, when life's tough you have to pull out all the stops and we have not been disappointed! NEVER in a month of Sunday's would we have believed to have reached the goal in such a short space of time. The support we have received has been overwhelming.
We were and are flabbergasted. A humongous thank you to everyone that has helped us reach our ridiculously high ambitious online target. Your generosity and kind words of support have truly been valued.
Putting the money raised to good use has been hampered due to 5 long stays in intensive care, he recently celebrated turning 3 whilst in the high dependency unit. However, I am now Mrs Organised and am filling out forms galore, applying for Finley's Koala power chair, a Motability vehicle and postural car seat.
We have got planning permission and had architectural plans drawn for the house but are not much further forward with any building yet. Numerous applications have been made to D.I.Y SOS but to no avail....never liked Nick Knowles anyway!! We will tackle the house once we have accomplished the equipment and car list! A productive year ahead of us and I dearly hope a few less hospital stays.
You can keep an eye on Finley via his Facebook page.
Thanks one and all for making difficult times feel much less of a burden.
Love from Rosie, Joel, Kyle and Finley xx
Thanks billions to all who have donated, shared, supported and are continuing to support us, especially with the recent life events being so rubbish. We will go on! Big love x