Belfast Telegraph

Teen dancer Natasha O'Connor stricken with rare spinal condition

By Victoria Leonard

The family of a teenager who represented Northern Ireland in an international dancing competition have launched an urgent fundraising appeal for medical care after she was diagnosed with a potentially life-changing spinal condition.

Natasha O'Connor (13), who is from Strabane and a pupil at Holy Cross College, has been dancing since she was four and is proficient in tap, ballet and acro.

Last year she travelled to the Dance World Cup in Germany as part of a local team from Encore Dance Academy, which does classes and tuition in ballet, tap, modern and street dance.

However, her mother Mandy said her daughter has been left "devastated" after her concern at a "bone sticking out in her back" just four weeks ago led to a diagnosis of thoracic scoliosis, which the family fears could shatter her dancing dreams.

"Natasha told us about four weeks ago that a bone was sticking out in her back behind her shoulder," Mandy said.

"We took her to A&E on August 15 and an X-ray showed it was scoliosis and there was a 45 degree curvature of the spine. It was a big shock and we are still getting our heads around it.

"When we got the diagnosis and they said they would make a referral for her to see an orthopaedic surgeon, but it would take at least four months, so we went to see a private consultant.

"The consultant said he could offer her a brace, and we asked him if he could guarantee it would keep the condition at bay.

"He said no, that it could progress, and that they would X-ray her six months after the brace and if it progressed they would refer her for fusion.

"That would involve fusing her spine with rods and screws which could limit her mobility and growth."

In search of a treatment which would allow her daughter to continue with her passion for dancing, Mandy began to research the condition and came across vertebral body tethering (VBT) - a procedure not available here.

"It is a keyhole surgery and it doesn't affect growth. They put a 'cord' between each vertebrae so the spine will continue to grow," she explained. "It's not a 100% fix, but it will straighten the curvature to maybe 10 degrees and it's a one-off, less invasive operation than fusion.

"We have found a surgeon in Turkey who has advised us to act fast, as the curvature is already 45 degrees, and if she continues to grow it will get worse.

"Another 10 to 15 degrees and she will no longer be a candidate for VBT.

"The surgery costs £35,000 and the surgeon said he would take her before the new school term started. It's just trying to get the funds, and as soon as that happens we will go. We're hoping to get her over by the end of October at the latest."

Mandy, who admits that she didn't know what scoliosis was just a couple of months ago, says that her family has been on a "rollercoaster" as they try to come to terms with the condition and secure treatment.

"Natasha is very down at the moment, it's very hard for such a young girl," she explained.

"She's not happy about the operation, but we feel it's the only way forward for the rest of her life and she will be able to get back dancing, whereas fusion would limit everything.

"Dancing is her life - she dances three days a week, she has so many friends and she doesn't know any different - she has been dancing since she was four.

"She is about to go into third year at college and she wants to do dancing and hair and beauty.

"At the minute she can still dance and they say the dancing is good exercise, but if she has any discomfort she has to stop."

Mandy has been gaining support from online forums, which have enabled her to talk to other parents whose children have suffered the same condition and undergone VBT surgery.

The family are appealing for the public's support so Natasha can travel to Turkey for her operation as soon as possible.

To donate, visit her cousin Ryan Hegarty's page at www.gofundme.com/natashas-spinal-operation

Belfast Telegraph

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