Jack seeks help to buy a second skin

From the Telegraph & Argus, first published Friday 19th Sep 2003.

A 10-year-old boy, who helped to secure the future of his horse riding club for the disabled, is now fighting to find funding for his own needs

Jack Aggus, who has spina bifida and hydrocephalus, wears a special suit, called a second skin to help his walking and keep him out of a wheelchair.

The Oakworth youngster, who was born with part of his spinal column outside of his body, needs a new suit each year because of his growth. Next month he is due to be measured for his second suit made of highly elastic synthetic fibre and costs about £1,500.

Last year, Jack's parents, Anne and Ian paid for it themselves but this year they are struggling to find the money.

Anne said: "He is mobile but has to use a wheelchair for long distances. His feet are clubbed and twisted backwards and he needs something to pull his feet forwards again.

"The NHS cannot really offer him anything. We heard about the second skin 12 months ago and we took him to Manchester last October, where he was measured for the second skin.

"They told us that it would cost £1,320. We asked Airedale Hospital and a variety of people to help towards funding for it but the answer was basically no.

"We talked to a suit action group, who wrote to 14 local companies for funding in the region of £100 each. But they all said no. Now he needs his second suit."

Jack - the youngest of five children - travels to UMIST, Manchester, five times a year to see the specialist team, from Australia, for alterations to the heavy suit.

Anne said: "They are very, very busy because people are realising the benefits. I would not be pursuing this if I did not have faith in it.

"Jack puts up with it because of the benefits. He is still using the same muscles as anyone else but twice as much - it is like walking through water up to your neck."

Jack was supposed to have another visit in July for the suit to be adjusted but could not make it because his older brother was in intensive care. As a result, he has not being able to wear the suit for the last eight weeks.

Anne said: "We have noticed his feet have reverted back without the suit so we know it works. In the last year, his balance has been better because his feet were better aligned and he holds himself better which helps with his confidence and his mobility has improved.

"I feel quite sad that the NHS won't fund it when other parts of the country do."

Since March, Jack has been a member of the Haworth Riding for the Disabled. He attends every week and always rides a horse called Jimmy.

Three months ago he spoke at a Keighley Area Planning meeting to secure the club's future. Anne said: "When we walked in, he squeezed my fingers and said `I cannot do this mum.' Then the owners of the site spoke and he turned round and said `Yes, I can do this.'

"He stood up and simply said `My name is Jack Aggus. I am nine-years-old and I have spina bifida and hydrocephalus. I am in mainstream school and not very good at maths. But I am an excellent rider. It would be very upsetting for the club to close down.'" Jack, who attends Nessfield Primary School, is also a keen swimmer. And in the last few weeks he has been watching Mars from a telescope in his room.

His parents have been trying to raise funds to buy the new suit but Anne said it was slow going.

"If anybody is willing to help in any way it would be gratefully received. Everything is a fight - it really is," Anne said.

Anne can be contacted on 01535 645533

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