Aiveen (3) responding well to her scoliosis treatment in the States

ONCE SHE GETS THE CASTS ON, WITHIN TWO HOURS SHE’S FLYING IT, IT’S NOT AFFECTING HER AT ALL.

A three-year-old girl from Ballymote is responding well to scoliosis treatment as she travels over and back to the United States to receive care for her condition.

Aiveen Curley suffers from a rare condition known as thoracic left apex levoscoliosis, a form of Infantile Idiopathic Scoliosis.

She was diagnosed in March 2022 when her Mum Tara noticed she was leaning to one side.

Tara told The Sligo Champion: “I noticed when she started walking in January, I didn’t pass much heed and then at the beginning of March I noticed it was like a lump, she was leaning to one side. It hadn’t come up fully, and then all of sudden it started coming up on her and I noticed it when I was down in my Mum’s house when she was running, she was leaning over to one side.

“We brought her straight into casualty, they did an X-Ray on her and they suspected scoliosis. When I heard that, I knew straight away. I didn’t know much about it until we were referred to orthopaedic, and they sent her to Dublin.

“They wanted to do surgery on her, and the surgery was very invasive, I couldn’t go with it. I was searching every other avenue.”

Aiveen’s parents Niall and Tara did extensive research to see what their options were for Aiveen. Already concerned that the surgery in Ireland would be too invasive, there was also the added worry of waiting lists here in Ireland.

They had already waited a long time for an X-Ray, and knew that their precious daughter would be on a waiting list for a year at the very least.

They didn’t want to wait, given Aiveen’s condition, her severe curvature started at 76 degrees and was pushing against some of her other major organs.

Figures released earlier this year showed that there were over 300 children on a waiting list for scoliosis associated treatment at CHI.

In 2017, the then Health Minister and now the Taoiseach Simon Harris aimed to ensure that no child would wait longer than four months for scoliosis surgery.

Waiting lists mean that some families have been forced to travel abroad for their child’s treatment, and while this wasn’t the principal reason for the Curleys looking to the US, it was a factor in their decision.

But, Tara was keen to ensure that the option they decided on was the least invasive option for Aiveen.

And so, this took the Curleys to Philadelphia in the US, the only place this treatment was available for young Aiveen. As soon as contact was made, doctors in the US wanted Aiveen over almost immediately to begin treatment, such was their concern at the fact that her curvature was at 76 degrees already.

Since November 2022, Tara and Niall have been travelling over and back to the US with Aiveen for her treatment.

Aiveen has now completed over a full year of treatment with the hospital that specialises in scoliosis and her parents have advised that she is doing very well.

Aiveen’s curve has so far, reduced by 12 degrees. Although progress is slow for them, her parents remain very optimistic about her treatment, stating that the reduction of her curve so far, has already managed to push the spine away from any major organs it was lying against.

Aiveen’s treatment requires her to be placed under anaesthesia for over 30 minutes on a rotating table that very slowly yet, gently pushes the spine back into place for her, then she receives a special made cast known as a Mehta Cast which is applied to her upper torso and she wears this full time for two months to help continue to gently push her spine back into place until she returns to America to repeat the process.

She has received eight Mehta Casts so far and is due back for her 9 th cast in June. Aiveen’s parents have stated that she will have to receive a lot more casting sessions than they initially first presumed she would have to.

However, even though Aiveen is gaining progress at a slower rate they still remain very positive for her future outcome, and they will continue to cast Aiveen for however long It will take her to reach the satisfactory spinal degree level.

“It’s very stressful,” Tara added. “Just before she’s going in, she does be bawling. She’s at that age now, she knows the minute she gets to the hospital where she’s going.”

Aiveen will be attending preschool come September, and the treatment has proved to be successful so far.

Tara added: “It doesn’t (affect her). She’s bouncing around. Once she gets the casts on, within two hours when she comes round to herself, she’s flying. It’s not affecting her.

“We’re taking it one step at a time. Her doctor told us the last time that they’re willing to keep casting her once we’re happy to keep going over.”

They aren’t the only ones. There are at least 11 other families travelling to the hospital in Philadelphia with children for this treatment. This means the Curleys have the support of other families who have been through the same treatment, and can lean on them for help and support.

“They’re able to tell you things when you’re unsure. Some of the kids would be ahead of Aiveen, one child was getting casted a year before Aiveen. Great to get that help. They tell you things you’d be unsure of. Aiveen can’t get the cast wet, she’s not allowed near water or sand, if I was unsure about how to give her a bath, they’re able to tell you from their experience.”

Each time they travel to the US, they spend around four days there. But, it’s not just Aiveen they have to look after. Niall and Tara also have a son, Ethan who is older than Tara.

They are fortunate that Tara’s parents look after Ethan each time they have to travel to the US. It is understandably difficult for all, but the Curleys say that Ethan understands how important this treatment is for his younger sister.

Tara said: “The consolation is knowing he is well looked after at home with my parents while we are gone and they do lots of activities with him to keep him occupied each time, we video call each night before bedtime and his cousins are always staying at my parents to keep him company which is great.

“We have repeatedly assured him that this won’t be forever and someday we will return from America to tell him she doesn’t need to go back.” Ethan has joked: ‘Yeah Mammy, and that day can’t come quick enough’.”

Aiveen’s parents ran into financial difficulty at the onset of Aiveen’s treatment programme and had to turn to fundraising in order to help her receive the treatment they knew was best for her.

With the help of an online GoFundMe and the public’s generous donations towards it, along with other fundraising sources from many organisations, Aiveen’s parents have been able to travel back and forth to America and treat Aiveen’s rare condition.

Aiveen’s parents have expressed their sincere thanks and gratitude to everyone who donated or helped along the way in some way or another.

“We want to thank everyone for their immense kindness and have stated It has truly warmed our hearts to know that people who didn’t even know the family went out of their way to help us in our time of need.”

Pubs, shops, cafes, the local drama club, Ethan’s school Scoil Mhuire Gan Smál who organised a non-uniform day, football and soccer clubs along with colleagues in Niall’s workplace and many other venues all pitched in to show their support for Aiveen and her parents, the true acts of kindness have not gone unnoticed and Aiveen’s parents will be forever grateful for all those who got involved.

The Curleys may have to look at more fundraising down the line, as they are unsure how long their daughter will require this treatment for, but they will continue to travel for as long as they need to.