Can you help Vinnie enjoy visits to Wales?
LITTLE Vinnie Jones loves visiting Wales with his mum and dad from Aberdare and is trying to raise money for a new wheelchair to help him enjoy life and his holidays even more.
The two-year-old suffers from a rare genetic condition which means his muscles don’t work.
He lives in London with dad Luke James, 35, a builder originally from Aberdare, and mum Kelly Harrison,34, who lived in Cwmbach until she was four.
Both have relatives and friends in Cynon Valley and Swansea and visit often.
Luke’s parents Wayne and Diane James live in Aberdare and their little grandson loves visiting.
But Vinnie, who has just turned two, was born with spinal muscular atrophy type 1 a condition which left him without movement in his limbs and with weakened muscles from the age of four weeks.
Over time the tot has also the ability to swallow or to breathe independently. He has to spend 19 hours in every 24 breathing with the help of a ventilator and mask but that doesn’t stop him being happy, said hairdresser Kelly, who lived in Cwmbach until she was four and her family moved to London.
The bright little boy, whose brain is not affected, loves watching television, especially Teletubbies and The Clangers.
He also likes having cuddles and visiting family and friends in Wales.
“When Vinnie was first diagnosed we was told he wouldn’t make one year and now he is almost two and thriving,” said Kelly, whose father Stephen Jones used to run The Crown pub in Cwmbach and whose mother Kim Jones now lives in Swansea.
“He is developing mentally like any other toddler and is very cheeky.
“He is non-verbal because his muscles are weakened but he can hear fine. He likes all the things normal toddlers do.
“He can’t eat because of his condition, and is tube fed, but he loves tasters of ice lollies.
“He can’t swallow but he licks and tastes and spits them out.”
The family is fundraising to buy a state of the art powered wheelchair called a “Snap Dragon” which will enable Vinnie to move around freely and be the toddler he is unaided.
The chairs cost between £18,000 and £25,000 but nothing is available on the NHS because he is too young.
“We want to give Vinnie the independence he deserves,” said Luke, who met Kelly in Cwmbach when she was visiting and later moved to London himself.
“Words cannot express how proud we are of Our Boy Vinnie.”
To read Vinnie’s story and help the family, visit: www.gofundme. com/give-vinnie-hisindependance