The parents of a four-year-old girl with cerebral palsy are hoping to raise £30,000 so she can fulfil her dream of walking hand-in-hand with her dad.
Isabel Wallis can take a few steps with the aid of a walking frame, but last week she brought her mother close to tears when she told her that she would rather walk holding her dad’s hand.
Now the family, who live in Musselburgh, are raising funds for Isabel to have surgery that would help her walk unaided.
Mum Kate Horne, 36, said Isabel loved clambering about at soft play, but also wanted to be able to go on the slide at nursery with her friends.
“She just wants to do everything a normal four-year-old would be doing,” she said.
The selective dorsal rhizotomy (SDR) operation has so far mostly been carried out at St Louis Children’s Hospital in the US, but has also recently become available on a limited basis at Bristol’s Frenchay Hospital. However, many patients have been unable to secure NHS funding for it.
Ms Horne said: “We’d been finding out about it and pottering along with waiting to see if we could get an NHS referral. Then last week we were just talking as I was putting her to bed about how well she’s been doing with her walker, and she said she didn’t want to be walking with her walker, she wanted to hold her daddy’s hand.”
Moved to the brink of tears by the plea, Ms Horne and partner Rory Wallis decided it was time to push for their daughter’s operation, even if it meant raising the money to pay for it themselves.
The surgery would involve cutting nerves in the spine believed to be sending the wrong messages to Isabel’s leg muscles, causing them to tighten.
The operation costs £22,000, with intensive follow-up physiotherapy at £40 an hour, which would be needed four times a week for the first six months.
Ms Horne said her daughter had been born six weeks early, and was diagnosed with cerebral palsy at 11 months.
She said. “When you have a child diagnosed with something like this, it takes a long time to get your head around it. I couldn’t even read the newspaper stories of other people having the operation, I’d accepted my daughter for who she was. But I met a couple of families who’d taken their kids to America and it was life-changing for them.”
The family still hope the NHS might cover the cost of the treatment, but have decided to push ahead with fundraising in case that doesn’t happen, and to cover the aftercare, which will not be paid for by the NHS in any case.
Ms Horne said: “You would save money over her lifetime, because hopefully she then won’t need more physio, more equipment, she won’t need somewhere specially adapted to live.”
The family will be selling wristbands for £2 and plan to hold raffles and fundraising events. To donate, visit www.justgiving.com/isabelsfund.