THE parents of a two-year-old boy who were told their son wouldn't live past his first birthday are hoping to raise £40,000 to make sure he can stay at home.
Sullivan Smith has Congenital Fibre Type Disproportion, a rare muscle-wasting disease that affects only 200 people in the world.
Sullivan is only one of four people in the world with this particular strain of the disease, which affects all of his muscles, giving him particular problems with breathing, and his heart.
After spending the first nine months of his life in hospital, parents Fiona and Richard finally brought him home and are now trying to raise the funds to keep him there.
Helping to support the family is The Barber Shop, in Balcombe Road, Horley, where Mr Smith – who works at Tegen Limited in the town – regularly has his hair cut.
Tony Mirino, who owns the barber's, said: "I was just talking to Richard one day and he was saying he needed to raise some money and I thought why not raise some money in the shop."
Mrs Smith, 41, who is a full-time carer for Sullivan, said: "When Sully was born we thought he had a few breathing issues, but at one month old he was diagnosed with the condition at the Evelina London Children's Hospital.
"At three months he suffered a cardiac arrest from a common cold and we were told he wouldn't make it past his first birthday. But he has made huge progress and at two-and-a-half years old is still with us.
"It means so much to have him at home with us.
"Now we just want to get as much out of life as possible."
The severity of Sully's condition means he needs 24-hour care, must be held or supported by a person or chair at all times and has to be fed through a feeding tube.
Mrs Smith, of Turners Hill, gave up her job as a marketing manager to care full time for her son, but as Sully's needs develop with age, their living situation must adapt to keep him out of a specialist care home.
"It's getting difficult to carry him up and down stairs," Mrs Smith added.
"So we are looking to adapt our house so that we can have a bathroom and bedroom on the ground floor and make the house accessible for a wheelchair.
"We have already raised £11,000 through various fundraisers. We've had a huge amount of support. It's amazing how much people care."
The Barber Shop is donating all the proceeds it makes from a day of hair cutting on Monday (May 12). No appointment for haircuts is necessary.
Call The Barber Shop directly on 07581 332 494 or visit www.sullivansmith.co.uk for more information.
