Belfast Telegraph

Wednesday 20 August 2014

Radical surgery in US is little Oliver's only hope of walking

The parents of five-year-old Oliver Dickey from Coleraine have launched an appeal to raise £60,000 for treatment of his cerebral palsy, as Stephanie Bell finds out

Play time: Oliver Dickey (centre) has some fun with dad, Neil, mum Charlene, and brother Max (three). Far left, his condition confines him to a wheelchair. Pic Matt Mackey/Presseye.com

The freedom to jump in puddles, or to be able to simply bend down and lift his own toys off the floor, are the achingly innocent wishes of five-year-old Oliver Dickey, which his parents hope the people of Northern Ireland will help make possible for him this year.

Little Oliver, who has cerebral palsy and is confined to a wheelchair, has just been accepted for major surgery in the US – his only hope of ever being able to walk. It was a wonderful Christmas gift for his parents Charlene (28), a full time mum and Neil (31), a production worker when on December 20 they received the joyous news that little Oliver was an ideal candidate for the operation.

However, before they can give their son this life changing chance, the couple face the challenge of raising £60,000 to pay for the medical treatment and costs of bringing their son to the US.

On New Year's Day they launched the 'Help Wee Oliver Walk' appeal on Just Giving and just a few days ago on Twitter.

Within hours of Oliver's story being posted on Twitter, celebrities from the world of sport and TV, both locally and nationally, had backed the appeal. They include stars like Zoe Ball and Peter Andre.

Charlene says the family has been overwhelmed by the response.

"We have people like Barry McGuigan and the Olympic rowers Peter and Richard Chambers, model agency boss, Alison Campbell, the local football team in Coleraine and Derry City football team. Norman Whiteside, Zoe Ball and Peter Andre are all supporting the appeal and many have even re-tweeted to their Twitter followers.

"We also had little Oscar Knox's parents come on and voice their support which was one of the most touching events.

"It is overwhelming, especially as we know that Oliver is not the only child who needs this operation. Just to know that there are so many people out there who care is an amazing feeling."

It's been a tough road for little Oliver and his parents right from his birth.

Born six weeks premature on August 16, 2008, weighing 5lb 6oz, Oliver spent his first two weeks in the neo-natal unit in Antrim Area Hospital.

His parents were delighted to have their new baby home and all seemed well until they began to suspect that their little boy was not developing at the same pace as other children his age.

His mum recalls: "The months flew in and to us our beautiful little baby grew bigger every day. He developed his own wee personality and had us wrapped around his little finger. But as Oliver approached his first birthday we knew something wasn't right. He wasn't reaching the same milestones as other babies his age and his balance was not good and he couldn't sit or crawl."

A concerned Charlene consulted her GP who arranged for Oliver to receive physiotherapy.

When this didn't appear to make any difference Oliver was referred to a paediatrician who set up an MRI scan. It was a bittersweet time for the couple, who had just discovered they were expecting their second baby and the joy of that was mingled with fear for little Oliver.

Just a few days after the excitement of seeing their new baby at their first scan they were devastated to be told that Oliver had cerebral palsy.

"We knew something was wrong when the doctor asked us to come in and discuss the results of the scan," says Charlene.

"The doctor told us that Oliver had a type of cerebral palsy called spastic diplegia which means that his legs are very tight and he can be in a lot of pain at times.

"She told us that this meant that he might not be able to walk, but this was something that couldn't be confirmed until he got older. It was basically a waiting game.

"At the time I was four months pregnant with our second son, Max, who came along on September 20 of that year."

As time passed Oliver did begin to improve and his parents were delighted when he started crawling properly and began to pull himself up on furniture around the house.

But as his little brother Max, now aged three, started to grow and develop it became more obvious just how bad Oliver's cerebral palsy was, not only to his parents but to an increasingly aware little Oliver.

Charlene says: "Max began walking at 10 months and Oliver just sat and watched. One day he said to us 'look, Max is walking'. We were broken.

"We pushed harder with more physio and hydrotherapy and we bought equipment for the house to help us with his daily physiotherapy routine.

"Oliver became more determined once Max started walking and began trying to use a Kaye walker."

The contrast to other children became even more apparent for little Oliver when he started nursery and later Millburn Primary School.

Charlene recalls: "When he started nursery he went in everyday in his wheelchair but tried at least once every day to walk a wee bit in his frame across the classroom. But he knew he was different. He would say that the boys and girls could run but he couldn't.

"He started primary school in September 2013 and I have never seen him so happy. He just loves it.

"The kids in his class are brilliant with him, they push him around in his chair, they draw him pictures to take home and they never leave him out.

"But once again, Oliver knows he's different. He came home one day and said: 'Mummy the boys and girls can jump in the puddles but I can't'. That was just heart breaking and we knew we had to do something."

Charlene and Neil began to look into what medical options were available.

They discovered that a surgical procedure known as Selective Dorsal Rhizotomy (SDR) offered major hope for children with the same form of cerebral palsy as Oliver.

It is a major operation which in simple terms aims to remove the dead nerve endings from the spine to allow the ones that do work to perform more effectively.

The waiting list in the UK was so long the family turned to the US. It took some months to get Oliver's medical information together and forwarded to St Louis Children's Hospital in America which is a major centre for the surgery.

On December 20, just over a week after posting the information to the hospital, the couple were overjoyed to receive an email from the consultant Dr Park informing them that Oliver is an excellent candidate for the surgery.

He went on to say that after surgery he expected Oliver to be able to walk independently, at least in a protected environment.

"It was just unreal," says Charlene, adding: "The thought that one day Oliver could do something simple like walk to the toilet or pick up a toy that he's dropped on the floor is a wish come true for him and us."

It is believed that the best time to have the surgery performed for maximum benefit is when the child is aged between four and seven years.

Oliver needs two operations while in American and together they will cost £48,000. He will then need a year of intensive physiotherapy and special equipment which in total his parents estimate will cost around £60,000.

Charlene says: "It's a lot of money and we just have to hope and pray we can raise it and hopefully be in the position to allow Oliver to have the surgery this time next year.

"It will be life changing for Oliver and for us as a family. Just to even imagine him being able to walk into our living room on Christmas morning for the first time on his own is amazing.

"Oliver himself summed it up when he said all he wants is to be able to pick his own toys up of the floor – a simple, everyday thing that the rest of us can take for granted".

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