Lottery win couple’s generosity will lead one little girl to a life free of crippling condition

Little Isabel Wallis, with mum Kate and dad Rory

Little Isabel Wallis, with mum Kate and dad Rory

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LIKE most four-year-olds, Isabel Wallis likes nothing better than riding her tricycle through the hall of her family’s Musselburgh home, terrorising her parents.

It is a common scene in homes across the country but, for Isabel’s family, it is a heartbreaking sight.

The Weirs

The Weirs

For, unlike most four-year-olds, Isabel may never graduate with her friends to her first bicycle. Instead, she faces the very real prospect of being wheelchair-bound within a year.

Isabel suffers from spastic diplegia – the most common form of cerebral palsy, and a condition that makes even basic body movements difficult.

Her parents, Kate Horne and Rory Wallis, know the outlook is bleak and would do anything to make their only child’s life better. They would swap all the money in the world for Isabel’s future.

Last week, a couple who have all the money in the world – well, £161 million of it to be exact – answered their prayers.

Isabel Wallis currently uses a walking frame

Isabel Wallis currently uses a walking frame

“It’s utterly mindblowing,” says Kate, after it was revealed Euro-Millions lottery winners Chris and Colin Weir – the Ayrshire couple who scooped the mammoth jackpot last year – had stepped in to fund the cost of a state-of-the-art operation for Isabel.

“We never thought she would have the opportunity to have it done, not only by the leading surgeon in the world but also the world’s leading rehab team. All this only happened last week,” she adds. “And I’m surprised I’m having this conversation so rationally now.”

Isabel’s condition means the receptors in her spine do not function properly, continually “telling” her muscles to contract, meaning she must overcome extreme stiffness and rigidity to move her legs, hips and pelvis.

Although she is, in the words of Kate, a “real trier”, without the operation, her prospects of having any kind of mobility are deteriorating rapidly.

“Isabel uses a walking frame at the moment and can probably walk about half a mile at a time but her legs cross over really badly,” says Kate.

“If things stay as they are, she will be wheelchair-bound in about a year and would then require extensive bone surgery in two to three years. She wouldn’t really be mobile at all.”

Kate and Rory, 33, set about fundraising after identifying the surgical procedure, Selective Dorsal Rhizotomy (SDR), which helps restore lower-body movement to spastic diplegia sufferers.

In the six months since they set up the Isabel’s Fund Facebook page to appeal for money, they have managed to gather £15,000 after friends and family embarked on a series of charity challenges, including bungee jumps and sponsored abseils from the Forth Bridge.

Rory alone managed to raise £1000 with the help of colleagues at Wetherspoons pub in Musselburgh, where he works as a chef.

But while SDR has been available in the US for the best part of 20 years, only a handful of operations have been carried out in the UK, at Frenchay Hospital in Bristol.

As well as the cost of the operation, which is more than £35,000, there is a gruelling, two-year long course of physiotherapy and rehab to pay for.

“Basically, the operation cuts the neurones that do not work,” Kate says. “It’s then two years of intensive rehab to get the remaining neurones to work as well as they can and the muscles to move properly.

“So far only one other child in Scotland has gone down to Bristol to have it done. In the UK there have been only 24 of the operations carried out and I think they’re hoping to start it in Edinburgh next year.”

The Weirs’ donation – the exact amount of which is being kept under wraps – will pay for Isabel’s operation to be carried out by Dr Tae S Park, the world’s leading SDR surgeon, at St Louis Children’s Hospital in the US.

“Isabel’s granny wrote to the Weirs because her family is from Largs, where they’re from, and she knew they were supporting local children.

“Their PR called them then they asked for more information and then they got in contact with me and asked if we wanted to have it done in Bristol or the US, and said they would cover the cost of the operation, as well as the cost of travel and 
accommodation.

“Rory and I spent quite a few days discussing it and talking it through. The St Louis team are the world leaders, and they do five weeks of rehab there whereas in Bristol you are discharged after two and a half weeks.

“We’ll have brilliant private physiotherapists on board. This gift gives us the opportunity to concentrate on 
Isabel 100 per cent for the first month, which is when it’s most stressful.”

Rory added: “It was almost too much to take in when we found out last week.

“The big donation from the Weirs has made the dream come true but we do not want anyone to think that we don’t appreciate contributions.

“We’ll need to raise another £20,000 to cover the cost of physio after the operation and she will need a lot of physio.”

The couple say they will travel to St Louis in November for the operation, but have yet to finalise a date.

They say Isabel, a pre-school pupil at Musselburgh’s Campie Primary, has no idea what will happen to her in St Louis and they feel that trying to explain it to her now would just leave their daughter “in a bit of a pickle”.

However, based on Dr Park’s previous success with SDR patients, the couple are hopeful the operation will help transform Isabel’s life.

“All of his patients have had increased quality of life and seen significant improvement in their mobility,” explains Kate. “The prediction among her doctors in the States is that she will definitely be able to walk on crutches, that she will probably be able to walk independently and that her strength and stamina will be greatly improved.

“She won’t get cramps and she won’t have pain that cerebral palsy sufferers have as their muscles grow. They also say her balance, independence and level of comfort will all improve.”

She adds: “There’s also the thing about doing it so young. It hopefully means that she will not need more surgery as she gets older. And she has time to have the operation and physio at the moment and doesn’t have the demands of school or a job. This operation is so important. All Isabel wants to do is walk without needing to use a frame, and be able to hold her dad’s hand.”

Chris and Colin Weir, who have 
already donated some of their winnings to local good causes across Scotland, said their aim was to recognise the couple’s drive to achieve the best possible treatment for Isabel.

“Kate and Rory have worked so hard to raise the money needed for Isabel’s operation, so it was a pleasure to help,” says Chris. “We hope that the operation will give Isabel the chance of an active life. We wish her well.”

About the illness

Spastic diplegia is a form of cerebral palsy which tends to affect the legs of a patient more than the arms. Despite this, most sufferers will eventually walk.

A person with spastic diplegia typically has a crouched gait. Toe walking and flexed knees are common attributes and can be corrected with proper treatment and gait analysis.

In many cases, the IQ of a person with spastic diplegia may be normal. However, other side effects, such as strabismus – the turning in or out of one eye – affects three quarters of people with the condition.

Specialised treatments include leg braces, gait analysis, botox injections, hyperbaric oxygen treatment, and other treatments, such as work with a physical therapist, pediatrician, physiatrist, neurologist and neurosurgeon.

Easing the symptoms

Spastic diplegia is a form of cerebral palsy which tends to affect the legs of a patient more than the arms. Despite this, most sufferers will eventually walk.

A person with spastic diplegia typically has a crouched gait. Toe walking and flexed knees are common attributes and can be corrected with proper treatment and gait analysis.

In many cases, the IQ of a person with spastic diplegia may be normal. However, other side effects, such as strabismus – the turning in or out of one eye – affects three quarters of people with the condition.

Specialised treatments include leg braces, gait analysis, botox injections, hyperbaric oxygen treatment, and other treatments, such as work with a physical therapist, pediatrician, physiatrist, neurologist and neurosurgeon.