An 11-year-old boy who has been left unable to talk and with severe mental difficulties has seen Christmas come early after youngsters from across the country travelled to a special festive party.
Carl Normandin, who lives in Bicton and attends Severndale School, suffers from Rubinstein-Taybi Syndrome and is believed to be the only recorded case in Shrewsbury.
But last Saturday (December 9) around 20 youngsters with the disease and their families visited Bicton Primary School for a special Christmas party, including a visit from Santa.
It’s the first time a party for the youngsters has ever been held in the town. With an estimated one in every 300,000 people suffering from the disease there is just one support group for the whole country.
Carl, who also suffers from autism, has had more than 20 operations at hospitals in Liverpool, Oswestry, Shrewsbury and Birmingham since he was diagnosed at the age of ten months.
He nearly died when he suffered breathing difficulties as a toddler and had to be tube fed until he was seven due to a cleft palate.
He communicates using the Makton sign language and is sometimes forced to go in a wheelchair due to operations on his legs. Carl attends the Bradbury House respite centre in Monkmoor for 10 days every month.
The family have secured a £20,000 Disabled Facilities grant from Shrewsbury and Atcham Borough Council to build a shower room at their home.
April Normandin, Carl’s mum, said: “We had 96 people in total and they came from as far as Bristol, Scotland and Leicester. Carl loved it and got to sit next to Father Christmas.”