Carlow girl with scoliosis gets surgery in US after being failed by Irish state

An eight-year-old girl from Carlow has undergone a successful scoliosis surgery in the US after her parents raised over €300,000 to get her there.

Rozanne Kelly’s parents were told by doctors in Ireland that their daughter would not be eligible for scoliosis surgery here, and were denied HSE funding.

They decided to find their own way to help their daughter, setting up a GoFundMe that raised €170,000, and coming up with almost €310,000 elsewhere.

It’s been four months now since she had the surgery in Florida and she is “getting better with every passing day,” her mother told the Sunday Independent.

Roxanne’s mother, Máirín Nolan Kelly, said she felt neglected by Children’s Health Ireland when Roxanne spent four years on an “urgent surgical wait” list for a procedure on her legs and pelvis.

It was to improve the effects of a condition called arthrogryposis, which severely restricts the movement of Roxanne’s limbs.

She was placed on the list when she was three years old, but her parents were never contacted with a date for surgery.

Last year, Roxanne travelled to Florida to have a paediatric orthopaedic surgeon perform the procedure.

“Roxanne couldn’t sit because the joints in her legs were so stiff. We had to get over to Florida before she got to a point where she was unable to fly,” Máirín said.

By the time Rozanne got home from Florida and scoliosis surgery could even be considered, her spine had a curve of over 80 degrees, leaving her parentys worried about how that would impact her organs.

“When we met with the team in CHI, they disagreed entirely with the concept of Roxanne undergoing surgery on her spine. They said she was unfit for surgery, and suggested putting her in a brace and Peg [percutaneous endoscopic gastrostomy]-feeding her. I definitely didn’t want to Peg-feed her because my daughter eats perfectly well, and with her arthrogryposis, putting her in a brace would restrict her movement entirely,” Máirín said.

“When you have a child with a disability that needs surgery, you have to take the risk. The alternative is to do nothing and wait for their health to decline and possibly pass away,” she added.

“I had been to the Paley Institute and saw first-hand what they could do for my daughter. In my experience, I don’t think that teams here in Ireland can cater for children who have very complex needs,” she said.

The Paley Institute is where Rozanne ended up having her surgery done, costing €60,000.

Roxanne’s story was raised in the Dáil in February, where Sinn Féin TD Pearse Doherty quoted Máirín ,saying: “We have been left with nowhere to turn.”

“Roxanne is just but one child being failed,” Mr Doherty said.

“Hundreds of children are waiting. We know that 525 scoliosis operations for children were cancelled in the past four years. Nine years ago, the Tánaiste promised that no child would wait longer than four months for spinal surgery, but children are still left in awful situations. When is the Tánaiste going to keep his promise?”

Máirín was told that Jennifer Carroll MacNeil, or somebody from the Health Department, would contact her, but they never did.

Roxanne is now in a “really good place.”

“She’s flying it,” her mother said.

It’s hoped that assistive technology can be obtained for Roxanne when she attends school, to allow her to “flourish educationally.”

“When children like Roxanne have the right set-up and supports, they thrive, but otherwise, they can become very unwell,” Máirín concluded.