A mother of a seven-year-old girl, who is going to the United States for scoliosis surgery, has said she was "extremely worried" and had "nowhere to turn" due to the difficulty of getting treatment in Ireland.
Máirín Nolan from Co Carlow was speaking as new figures reveal that 525 scoliosis surgeries on children have been cancelled by Children's Health Ireland hospitals over the last four years.
Ms Nolan said her daughter Roxanne was born with a condition called arthrogryposis, which affects all of her limbs and she also developed scoliosis.
Speaking on RTÉ’s News At One, Ms Nolan said: "(Due to) her arthrogryposis from the beginning, her arms are lock-straight and her hands are together and they don’t open.
Watch: Roxanne 'still going' despite progression in spinal curve, says mother
"So she had to learn to use her arms in a different way, so she can’t put her hands up to her mouth or feed herself."
Ms Nolan said her daughter was "also born with her legs completely folded, dislocated hips and her knees were very tight, and she had clubbed feet when she was born".
Her mother said, despite this, Roxanne did her own thing to get around the house, such as rolling around the floor and added that she developed early childhood onset scoliosis at two years old.
Despite her conditions, Ms Nolan said her daughter, who is a "very easy child" and attends a Gaelscoil in Carlow, just wants to play and have fun "like everyone else".
However, Ms Nolan said her scoliosis has worsened rapidly in the last year.
On Roxanne not being able to get scoliosis surgery in Ireland, Ms Nolan said she spent time going between Roxanne’s doctor, paediatrician and the surgeon back and forth.
"The years went by and then he actually left on voluntary leave and we were just left in limbo after that," she said.
"It was really hard for me because I was looking at her with her legs folded and knowing that she was going to grow, I knew that she wasn’t going to be able to sit up anymore.
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"She goes to school, she has her own powered wheelchair and I knew she wasn’t going to be able to sit up. Her legs were going to get in the way as she grew," Ms Nolan said.
She said she was "extremely worried" about Roxanne’s legs but had "nowhere to turn".
"It was a long time in a child’s life to be left with no plan or anything, then going forward," she added.
Ms Nolan said the family then sourced out their own surgeon in the US for Roxanne, who specialises in arthrogryposis and spinal deformity.
Roxanne underwent major hip and leg surgery in Florida, where the family had to stay for three months.
As a result, she is now able to sit up and her legs are able to move and are not locked anymore.
"She is really in a good place that way but her scoliosis has developed to 80 degrees now and she needs a surgery done to straighten her spine before it starts really impacting on her health," Ms Nolan said.
She said Roxanne is exempt from a fund for children in Ireland who require scoliosis treatment overseas, as she saw a consultant in Ireland only two times.
"He wasn’t going to put her on the surgical wait list now because he has just met her and he is not ready to put her on the surgical wait list," she said.
Ms Nolan said as a result, her daughter has been blocked from getting any funding to see the surgeon in the US who already performed her leg and hip surgery.
Roxanne’s mother has reopened a GoFundMe page for her daughter. Over €134,000 has already been raised for Roxanne as part of the fundraiser.
Posting an update on the page yesterday, Ms Nolan said: "We are so grateful to everyone who is sharing and donating to Roxanne’s cause.
"Every little bit is helping us reach our goal. We feel blessed that so many of you care about our beautiful little girl and want to see her get the care she needs."
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