Scott was born with SMA2 (Spinal Muscular Atrophy) which means he has been condemned to a reduced lifespan that also means he requires 24 hour care as he cannot stand - let alone walk - and gets about with the use of an electric wheelchair.
Scott aged about 4
This is a recent photograph of my 3 sons; Ayden, Scott and Scott's twin Matthew (non-identical!).
All 3 are students and live together in Greenock on the West Coast of Scotland (due to their mother taking them away when they were around 8 yrs old) the rest of their family live predominantly on the South Coast of England, several hundred miles away, myself included.
Me with my boys when we were all much younger!
Getting around isn't easy as they rely on paying for local taxi's that have specially adapted vehicles. When the boys wish to visit the rest of the family (including their 80 yr old grandparents) it involves long & arduous and complex trip involving 3 long train journeys and a rushed & tricky trip across London to make one of those connections. Exhausting stuff. Matthew & Scott aged around 6
I am hoping to raise enough money to pay for a 2nd hand WAV (Wheelchair Accessible Vehicle) that they can use to get about in, thus enabling Scott to get around more and not be confined to the house so much. It would make their visits South much less complicated and stressful.
My local pub and the family are raising funds also, predominantly to pay for Scott's brother's driving lessons so that they can actually drive the WAV we hope to get. Scott on one of his many visits to hospital
Scott has endured so much in his short life; more operations than I care to mention (including having titanium rods attached to his spine to help hit sit up) and we have nearly 'lost' him on several occasions as he is prone to chest infections & collapsed lungs!
He is much loved and such a bright lad and it breaks my heart to see him this way, particularly as his twin & younger brother are unaffected (although they may yet carry the faulty SMA gene) and are leading "normal" lives with friends and girlfriends; that said, they are always there for Scott and he will always remain their No 1 priority and they are in effect his full-time carers - not easy for students trying to study and behave like 'normal' young men!
Scott two summers ago
When I mentioned to Scott that I was thinking of setting-up something like this page he replied in his usual, modest, unselfish way by saying;
"It's OK dad, I am alright - I am sure there are people out there that need more help than me"!!
Well, that may be so, but I think he deserves a little bit of help to make his life easier - especially now that any motability allowance he might have been offered has been swallowed up by his care package (he has carers in to help him turn him, assist him to the bathroom etc when his brothers are at college or sleeping).
So any little bit that we can raise towards this aim of being able to help obtain a vehicle would be fantastic and very gratefully welcomed!
Any 2nd hand car dealers please take note!
Thank you so much for taking the time out to read my plea.
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