The mother of a five-year-old boy who suffers from a rare and debilitating disease is appealing for charitable donations to help pay for his treatment.
Alfie Smith suffers from glutaric acidemia type 1 - a condition which affects the body’s ability to break down proteins and can lead to brain damage and loss of movement.
Alfie, who attends Awsworth Nursery and Junior School, is now unable to walk, undergoes week-long courses of intensive therapy every month.
The therapy costs £700 but the NHS will not fund it. He is also dependant on expensive specialised adaptions of everyday children’s items such as a bike with costs up to £1,500.
His mother, Michelle Wheelan, 38, of Awsworth, said Alfie was showing progress but the pressure of paying for his treatment was becoming hard to bear.
She said: “Nobody knows how long Alfie will need therapy - it could be five months or it could be five years but we have been told if he continues to go he will improve so we cannot afford to stop.
“We want to be able to give him the opportunity to keep going all the time.”
Glutaric acidemia type 1 causes amino acids to build up so Alfie is on a low protein diet and his treatment involves stimulating the part of the brain which controls movement.
“He is absolutely amazing,” said Michelle.
“Nothing stops him despite this problem. He has a brilliant sense of humour, has loads of friends and loves going to school.”
He has to have so much medication and we have to go to hospital all the time for blood tests but he never moans.
Michelle is appealing to members of the public and businesses for donations of cash or raffle prizes for fundraising events.
If you think you can help phone Michelle on 07866 053434.