It will cost £50,000 to help Titchfield Common three-year-old Harvey Young have a life-changing operation in America to treat spastic diplegia, a form of cerebral palsy.
Natalie, Harvey and Nick Young
But parents Natalie and Nick are determined to raise the funds to get the tot the operation in the world’s leading hospital in St Louis, Missouri.
The couple, who live in Bellflower Way, have been overwhelmed by the support in the past three weeks of fundraising – and have already received £4,000 of donations from friends, family, neighbours and even people they did not know.
The selective dorsal rhizotomy (SDR) operation involves cutting the nerves at the bottom of Harvey’s spine to remove the spasticity and overworking of the nerve signals to his leg muscles.
For Natalie and Nick, it will all be worth it when they see their son independently walk, run and jump alongside other children.
“He is fine in every other way, in his speech and his intellectual side, it’s just he can’t walk,” said Natalie, aged 34.
“It would just be so overwhelming to give Harvey something for his future life – walking, which is something he should be able to do.
“I feel emotional and overwhelmed. You just want the best for your child and for his future.
“I wouldn’t say he suffers at the moment because we keep his muscles supple with his stretching exercises. But that could get worse as he gets older without the operation.
Harvey Young
“I’d love for him to be able to jump in puddles on his own and simple things like that. But he just can’t do it on his own.”
At one year old Harvey had an eye test that showed a wobble in his eye. He later had an MRI scan and other tests and was diagnosed with the condition aged 15 months. He walks with a frame with wheels and has special shoes and a tight blue suit which restricts his movements and builds his muscles up as he moves.
The determined youngster likes to prove he is able to walk and climb on play toys at Jadella Juniors child minders in Fareham.
“He’s aware he’s different from other children,” said Nick, aged 38, who works as a system engineer at NATS air traffic control.
“I think he recognises that he can’t do a lot of what other children can do. He does it at his own pace.
“One day he went up the climbing frame, which had a ramp to get up and he climbed up on his own. He was so proud. Each time another child came in they had to see him do this.
“The hospital has given the prognosis that he would walk independently in all environments. If he gets to that stage where he can walk independently that’s quite a significant step in his life.”
The SDR operation is available on the NHS, but the parents have been told that recent applications in this area have been refused and it often takes more than 18 months from referral to getting a decision on the operation on the NHS.
Help4Harvey campaign
But they were given the go-ahead last week by the American hospital and now have until the end of May to raise the funds before the surgery in June.
Numerous fundraising events have been planned to help towards the £35,000 operation and £15,000 of physiotherapy treatment and equipment, including little weights, a foot press and trampoline.
Nick’s colleagues will be fundraising by shaving their heads, while other friends and neighbours will provide cake sales, raffles, gigs, a cabaret event and a pub quiz. Some of the couple’s friends will be challenging themselves to marathons and half marathons for the cause, as well as a 12-year-old girl who will be undertaking a 24 hour sponsored silence.
Natalie, the duty manager of The Quays swimming and leisure centre in Southampton, has been organising two spinathon events with colleagues and staff at nearby leisure centres.
An indoor spinathon will be held at The Chamberlains in Southampton with two sessions of around 85 stationary cyclists completing three hours pedalling at the end of April. An outdoor spinathon is planned for May.
To donate to any of the fundraising events or to create one, visit www.help4harvey.co.uk.