'Ann Marie can stand and walk now, she's got her life back.. we don't want anything else for Xmas' MUM'S JOY AT LIFE-CHANGING OP FOR GIRL.

Byline: BY OLIVIA KELLEHER

A GIRL who was in constant agony with the crippling back disorder scoliosis is now set to celebrate a pain-free Christmas.

A year ago Ann Marie Kelleher, 13, was virtually confined to bed with the spinal condition which left her bent over with a curvature of 115 degrees.

Parents Tom and Bernie Kelleher, from Killavullen, near Mallow, Co Cork, were almost at the end of their tether.

Sleep was a luxury as Ann Marie, who developed scoliosis as a secondary symptom of Rett Syndrome, was in agony and needed round-the-clock care.

Bernie said: "Tears would slide down her cheeks with no sound coming from her. It was unbearable. This time last year was a nightmare. I was wishing Christmas away.

"Ann Marie was so uncomfortable. We were giving her painkillers and they were doing nothing for her. We were all at breaking point.

It was cruel to have her in so much pain."

Feeling "beyond frustrated" at the HSE's failure to set a date for an operation, the family spoke to the Rett Syndrome Association in the UK who suggested a meeting with Dr David Harrison, a London-based consultant orthopaedic spinal surgeon.

Surgery abroad was ruled out after they were told Ann Marie was ineligible under the National Treatment Purchase Fund or the HSE's Treatment Abroad Scheme.

However, officials agreed to pay for an operation in London for Ann Marie who had been on a waiting list for surgery at Crumlin Hospital for 10 months.

The HSE agreed to pay for the surgery days after an anonymous benefactor offered to fund the EUR100,000 operation.

Ann Marie had the first of two major surgeries in April at the Royal National Orthopaedic Hospital in Stamore, London.

Bernie revealed: "I was scared stiff. I felt weak. This was the beginning of ending her and our torture, the pain and cruelty was going to be in the past. It was extremely hard to take everything in. My eyes were stinging.

I cried so hard my throat and chest hurt."

However, the results were beyond Bernie's "wildest dreams". Ann Marie is now pain free - she no longer has trouble breathing, eating or sitting for long periods. Her organs are now not under pressure as the curvature of her spine is now 25 degrees.

The teenager, who had to give up school two years ago, is even walking again.

Bernie said she will be forever grateful for the care of staff at the Royal National Orthopaedic Hospital and Dr Harrision.

She added: "He has given Ann Marie life.

He has changed our lives. She is standing and walking something she would not have been able to do if she had surgery in Ireland. We brought her back to London for a check-up and it was very emotional on our flight to see how happy she was. She could sit in her seat with her head held high. She enjoyed the journey. It was magical."

While Tom and Bernie are still angry at for the months of waiting on the HSE, for now they are thankful for the gift of normal life.

She said: "It's fabulous. She is eating really well now and getting stronger. What she has gone through is torture.

"My other daughter Catriona is so excited to be able to go out as a family as it is years since we have done that. I am looking forward to Christmas now. We don't want anything for Christmas - we have it."

THE SYMPTOMS OF RETT SYNDROME

Rett syndrome is a neurodevelopmental disorder that is classified as a pervasive developmental disorder by the DSM-IV.

Symptoms include a deceleration of the rate of head growth (including microcephaly in some) and small hands and feet.

Repetitive hand movements such as mouthing or wringing are also noted.

Girls with Rett syndrome are prone to gastrointestinal disorders and up to 80 per cent have seizures.

The symptoms of this disorder are most easily confused with those of Angelman syndrome, cerebral palsy and autism.

Tears would slide down her face with no sound coming from her. It was unbearable

CAPTION(S):

SPECIAL GIFT Ann Marie Kelleher at home in Co Cork with mother Bernie Picture: PROVISION