THE fundraising efforts of the people of Flintshire are set to change the lives of a severely disabled teenager’s family.
Steven Wilkins of Connah’s Quay suffers from cerebral palsy and Angelman syndrome, a genetic disorder that causes sleeplessness and development delays.
Due to his condition the 17-year-old is unable to walk or talk, has severe epilepsy and hardly ever sleeps.
His family arranged a fundraising night in December in a bid to raise £5,000 to buy a specially-equipped car which would enable them to take Steven on days out.
Hundreds of Flintshire residents clubbed together on the night to smash the fundraising target and Steven’s mum and full-time carer Tracey, 40, said the new car is due to arrive today.
She added: “It will make such a difference to us and Steven, because he loves going out and about and meeting new people. We’re all looking forward to it and would like to thank everyone who made it possible.”
Despite their boost, the family is continuing to struggle to get a clearer picture of the illnesses Steven is forced to battle every day.
They have just discovered that Steven also suffers from Rett syndrome, an extremely rare autism spectrum condition which usually only affects girls.
Male foetuses with the disorder rarely survive because the disease-causing gene is located on the X chromosome.
Tracey said: “Steven volunteered to give blood for research and tests a couple of years ago and through that, the doctors have discovered that he has Rett syndrome.
“It is normally found in girls and is very, very rare in boys. It helps us to find out more about exactly what Steven is suffering from, so we’re glad it has been found.
“Research is changing all the time so we’re hoping they will be able to find out more eventually.”
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