Signs of scoliosis typically include a visibly curved spine, leaning to one side, uneven shoulders, ribs sticking out on one side, clothes not fitting well, and one shoulder or hip sticking out. For Lacie, 14, signs of her scoliosis first became apparent in February last year.
“We first noticed Lacie’s scoliosis in February 2020, we noticed her body was a little bit lop sided with her right hip sticking out more,” said Lacie’s dad, Mitchell Carter, 33.
“We took her to the doctors, we saw a nurse practitioner as there were no available doctors that day, the nurse could see what we meant, she said she thinks it’s just part of Lacie and nothing to worry about.
“Her curves must have been so slight then and of course we trusted a professional. We hadn’t heard of scoliosis before.
“Fast forward to July 2020, Lacie ordered some new clothes, when trying on a tight fitting skirt we noticed her right hip sticking out quite excessively. After searching on the Internet that’s when we came across scoliosis.”
Mitchell and wife and mum to Lacie, Laura-lea Carter, 32, took Lacie to the doctor who confirmed she did have scoliosis.
After undergoing X-rays, on the 30th October Lacie was told she had a 25 Thoracic and 48 Lumber S curve.
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Mitchell continued: “We were advised to come back in April to have more X-rays and to see what the percentage of the curves were then, however after doing lots of research, we realised, if the curves are over a certain degree they will get worse as time goes on and could end up with serious complications.
“We were not willing to wait and see. Lacie had more X-rays taken 2 months later on Christmas eve and we were told she has a 33 Thoracic and 55 Lumber, the curves had progressed in just two months.”
Lacie, a keen dancer, has been dancing since she was four-years-old, but had to stop in early 2020 as she was in some pain with her lower back (the cause unknown at the time).
Mitchell revealed: “She hasn’t danced since because of the pain, and now having scoliosis it’s made her lose so much confidence.
“When she was meant to return to school in September 2020, she was breaking down in tears as she couldn’t leave the house.
“We took the big decision to de-register her and home educate which has been going well. We try to go for walks as a family at least once a week, but as Lacie’s curves progress, she’s in alot of pain with her lower back and feet, where her body is off balance, so we can’t go for walks very far now.”
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Princess Eugenie, 30, was diagnosed with scoliosis at the age of 12, and underwent an eight-hour-long surgery to treat it.
The royal had titanium added to her spine to rebuild it as a result of a curvature.
Just last year, she shared a picture of the scar on social media.
The operation for scoliosis is a spinal fusion. The basic idea is to realign and fuse together the curved vertebrae so they heal into a single solid bone.
But fusion isn’t an option for Lacie. Mitchell explained: “Her consultant said if she was to be fused, it would leave her very stiff because of how low one of her curves starts. She would need fusing from L5/4 which is the most flexible part of the spine.
“This is when myself and my wife did hours and hours of research as we thought there must be other options.
That’s when we came across vertebral body tethering (VBT) We believe the best option for lacie is VBT. VBT is the best option especially for dancers and other physical activities such as gymnastics, due to using a tether which keeps the spine flexible.
“VBT is a keyhole surgery and less invasive. Rather than making a huge opening down the back that leaves a big scar, VBT requires just six small incisions at the side of the body through which the surgeons insert all their equipment, and the tether.
“There’s very little blood loss and recovery is really quick compared to fusion surgery and while a spine can’t be unfused, tethering is reversible. VBT will keep Lacie’s young back flexible and in its natural state, this surgery is still at trial stage with the NHS, it was developed in the US, it has been successfully treating children abroad for ten years.”
The only surgical solution in the UK currently is fusion.
But Lacie would need fusing as low as vertebrae L4/5 the lumber part of the spine where most of the spine’s flexibility is. Fusing this low would severely limit Lacie’s flexibility and day-to-day movement.
“Lacie’s a keen dancer, wanting to be a dance teacher when she’s older or as a backing dancer and being fused this low in the UK, she wouldn’t be able to dance at all in the way she can now,” said Mitchell. “To remove the discs and fuse the lumber, it would really restrict movement in day to day life let alone Lacie’s dancing.”
The family, who are based in Bournemouth, are currently fundraising for Lacie to receive VBT in Turkey at the Acibadem hospital with Prof Alanay. They’re hoping to raise £52,000, and so far have £24,000.
“Prof Alanay is a pioneering VBT surgeon in Europe and is doing several research studies and has published preliminary results,” said Mitchell. “He is the most prolific researcher of VBT in europe. UK surgeons are waiting for his papers and data to be published. He is highly respected as a Professor and leader of research.
“We have booked surgery for 26th March 2021. Time is an issue as you need some growth remaining in order for this to be a success, Lacie has nearly finished growing which is why it’s booked soon.”
But fundraising for Lacie has been “the most emotional, stressful and overwhelming experience” the family have ever encountered, with donations pouring in at the start, but a massive slow down with the emergence of the Covid pandemic.
“There’s only so much we can do,” said Mitchell. “We had a few events planned, my work was also going to hold a few big events and my son’s school was going to help but this has all been put on hold and now won’t be possible as the surgery date is so near.
“We’re counting on people sharing our pages on Facebook mainly. We printed leaflets and posters, we had about 30 people help post through doors and shops a while ago which brought in a bit. We had a few students do a live stream and one of Lacie’s friend’s did a 100 mile challenge over a month.
“We’ve had many companies kindly donate prizes for lots of different raffles. One online raffle made us over 2k. We’ve been overwhelmed with the generosity so far.”
The family, faced with such a short timeframe, are now looking for help much further afield.
To pledge support and donate to Lacie’s cause, please visit https://www.gofundme.com/f/26xat051o0.