Seven-year-old Jordan Chaplin dreams of walking on the beach with his brother and running after his friends in the school playground.
The smiling youngster, a pupil at Howard Primary school in Bury St Edmunds, is in so much pain he is virtually confined to a wheelchair.
But his family hope to raise £50,000 so that he can undergo a life changing operation in the United States.
“It will break my heart when he takes his first unaided steps. It will be a dream come true,” said mum Lynne.
“I’m very proud of him. He is always smiling even though he is in pain.”
Jordan was born almost 10 weeks premature and at a year old he was diagnosed with spastic diplegia cerebral palsy.
The condition over stimulates muscles in his legs
His family have already tried botox injections and having his legs in plastercast for six weeks to relax his muscles.
Both worked allowing him to walk using a frame or sticks – but as the pain returned so did Jordan to his wheelchair.
“It is heartbreaking when all he wants to do is run about with the other children in the school playground and lead a normal life,” said Lynne.
A doctor at St Louis Children’s Hospital in Missouri has pioneered selective dorsal rhizotomy, an operation on the nerves in the spinal cord to permanently release the spasticity in his legs and enable him to walk pain free.
Lynne says the operation is available in the UK but there is a 15 month wait to get a referal onto a three year waiting list.
“He said all he wants is to walk along the beach with his older brother Brandon. It is something most people take for granted,” said Lynne.
She is now organising fund-raising events under the banner of Operation Jordan including a charity car boot sale on May 5 and a ladies night on June 14 both at the Priors Inn, and a ice walk at British Sugar on August 4.
She hopes to arrange a charity ball and a skydive.