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News Archive > General > Help provide a lifeline for Oliver

Help provide a lifeline for Oliver

By Matt Dixon 21st October 2020

Help provide a lifeline for Oliver
Clare Fenwick with Oliver, husband Darren and youngest son Toby.

A boy who has a rare spinal condition may have to undergo surgery costing up to

 40,000. Oliver Fenwick, aged 12, was diagnosed with scoliosis two years ago and in June last year he was fitted with a body brace to “over-correct” the curvature of his spine.

Mum Clare told the Truro Voice: “He takes it all in his stride and his friends all understand that he needs to wear his ‘armour’. “He has good days and bad days but he takes his cues from me so I have to try and stay strong and positive.”

The Penair School student was diagnosed with adolescent idiopathic scoliosis in late 2018 after a lump was discovered on his back. An initial assessment measured the curvature at 46 degrees the family was told that he may require full spinal fusion surgery when he is older.

Clare did not want to “watch and wait” to see how the curve would progress, however, embarking on an exhaustive search for alternative treatment.

After extensive research they found the London Orthotic Consultancy, which offered Oliver a specialised Gensingen brace designed to over-correct the curvature and off-load the growth plate.

The brace is not offered by the NHS despite excellent success rates. It does offer a brace but it is a more compressive brace which doesn’t allow the spine to “de-rotate and overcorrect”.

In conjunction with the brace, which he has to wear 23 hours a day, Oliver follows a Schroth physiotherapy programme to improve muscle lengths and strengths.

“He only really tends to take off the brace when we help him with his physiotherapy in the evening. As a family we like being outdoors so if we go the beach we let him take it off  so he can properly enjoy himself.

The brace can be uncomfortable when he eats sometimes, so he tries to eat little and often.” Each brace costs £3,000 and only lasts around six to nine months, before Oliver outgrows it. He has had three since June last year, the most recent of which was fitted in August. “We need to keep one step ahead so that when he is ready for a new one, we are able to pay for it,” said Clare.

“We have really struggled to fund-raise for new braces this year because coronavirus has prevented us doing any events. Instead we have made face masks to raise money.”

The windows of the family home in Carnon Downs are cleaned by Aidan Jepson and he is planning to undertake an arduous fund-raiser next month. He is going to take part in the annual Escape from Meriden event, in which he will be chained to his friend Robert Standing when they set off to travel as far as they can in 36 hours.

The family’s fund-raising efforts are done through charity Just 4 Children, which supports children needing medical assistance for disabilities and conditions.

Clare added: “As Oliver is growing at such a fast rate, he will require braces every six to 12 months for the next few years. The braces may be enough to manage his curve, but he still may end up having full spinal fusion surgery in the future as there are, sadly, no guarantees.

“They are hopeful that by helping him with this fantastic brace and physio programme he has a good chance of avoiding the surgery but also he can learn about managing his condition by working with the orthotist and physiotherapist to ensure he can lead a good quality of life despite scoliosis.”

There are two types of surgery, a spinal fusion which would be done on the NHS, or a less invasive surgery which costs around £75,000 in the UK but can be carried out for around half that price in countries including America, Germany, Spain or Turkey.

In light of their limited opportunities for fund-raising this year, the family would be grateful to anyone wishing to make a donation or raise some money for Oliver’s ongoing treatments.

You can find out more about it by viewing Oliver’s scoliosis journey facebook page or to make a donation you can visit paign/OliversScoliosisJourney

Within that Justgiving page is a link to Aidan’s fundraising link for his Escape From Meriden.

By Matt Dixon 21st October 2020

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