Cork family hope pioneering surgery will change five-year-old Ali's life

She is unable to stand or walk on her own due to extreme tightness, known as spasticity, in her little legs, caused by abnormal messages coming from her sensory nerves.

She uses a walking frame to get around and a wheelchair for longer distances.

Her parents, Neville and Laura Murphy, discovered a pioneering surgery, called Selective Dorsal Rhizotomy (SDR) for Ali's condition, and first went to speak to surgeons about it three years ago. 

Now, Allegra, known affectionately as Ali, has an appointment for SDR this April with consultant neurosurgeon John Goodden at Leeds Children's Hospital and her family are fundraising to help cover the €80,000 the procedure and rehabilitation will cost. They have raised over €50,000 so far. 

The surgery will remove the spasticity in Ali's muscles making it easier for her to move and easing her pain.

Dr Godden has helped some 100 children walk. He studied SDR surgery in the US before first bringing it back to the UK in 2010.

The surgery involves cutting or removing tiny nerves in the spine that cause tight, stiff muscles — allowing children who rely on wheelchairs and frames to walk.

The pandemic has delayed assessments at the Leeds hospital and her surgery, scheduled for January was also delayed. 

But now the family is hopeful that their new April date for surgery will work out.

"When you have the appointment you have to try to go for it," Neville said.

"There's a sweet spot when these operations work, the younger the better really.

"We've done a lot of research into this. Surgeons in the UK and the US both said that Ali was a good candidate for this surgery. 

"It's been a very considered approach. The doctors in Leeds have been working with us, our doctors here, Ali's physio, Enable Ireland, on this. The surgery date has come up quickly but we've been working on this for years.

She may never play hockey for Ireland or run marathons, but with the surgery, she may be able to walk from her bedroom to the bathroom, or from the car to the school gate unaided. It could give her a chance at independence.

And the surgery is also likely to alleviate a lot of Ali's pain. 

Ahead of surgery, she trialled a treatment at the South Infirmary in Cork where botulinum toxin, known as Botox, was injected into her leg to relax the muscles and mimic the effect of the surgery.

"Ali slept well for the first time ever after that first treatment," Neville said.

"She had never slept well, she must have been in a lot of pain with muscle spams."

Despite her physical challenges, Ali is "feisty and fiercely independent" Neville said. 

She insists on making her own way into school, where she recently started junior infants, and on her second day in school, insisted on leaving her wheelchair behind.

"She is such a character. She has her own individual sense of style and she likes Nespresso coffee already!

"She's really good fun. 

"She's very unaware of her limitations. She talks about being a ballerina and doing gymnastics." 

While the surgery is covered by the NHS in the UK, the Murphy's have to find the €80,000 it will cost for the procedure and rehabilitation care for little Ali.

Neville said that he has been humbled by people's support for their daughter and the experience has taught him to never be too proud to ask for help.

"All the traditional avenues for fundraising are gone with Covid but the community has been amazing. 

"The response has been really touching. 

"Even in the middle of a pandemic, when a little girl needs help, everyone steps up."

Donations can be made on gofundme.