A 13-year-old ballet star with a devastating condition fears she might have to give up dancing- unless she raises money for an operation abroad.
Lily-May Potter and her family have made a desperate appeal to raise £45,000 for a pioneering surgical technique to treat her spine.
Just a day after her 13th birthday, Lily was diagnosed with severe scoliosis- which is where the spine twists and curves to the side.
The bubbly teenager from Maldon, Essex, would usually dance four times a week and would perform in pantomimes.
But now her curved spine is causing her severe pain and she struggles to get through a single dance without having to sit down.
Its left her in so much pain, she finds daily activities challenging and suffers from dizziness, nausea, spasms and tingling in her hands and feet.
Her mum Kathryn Barnett, 37, explained: “She’s in so much pain, it’s mainly in her back, neck and shoulders. She also gets pins and needles in her hands and feet.
“She had her first dance class when she was two and a half- she loves it. She used to dance Monday, Tuesday, Thursday night and would practice for the panto on Friday night.
“Lily loves ballet and tap but it’s a bit jarring on her back.
“She used to dance for hours but now she does one dance and needs to rest. She’s desperate to try and finish the panto but she’s in a lot of pain.
“She desperately needs treatment to prevent damage to her internal organs as the curve is so severe that if left untreated it would continue to progress, putting pressure on her heart and lungs.”
Problems first arose when Lily began suffering from back pain in the summer.
She said: “Over the summer Lily started to get a little bit of back ache. It was her 13th birthday on October 1 and on October 2 we went to hospital for an x-ray and that’s when they diagnosed her.
“They referred us to Addenbrookes Hospital where they told us about an operation.”
The only NHS treatment is to fuse Lily-May’s spine, which would end the Essex teenager’s dream of being a dancer.
It would restrict the movement of her spine and therefore restrict her movement as she dances.
Kathryn explained: “The only option is to fuse the spine so they open the back and they use screws and metal rods to straighten the spine and then they fuse the bones together.
“If she has the spine fusion she will lose the movement in those bones that are fused.
“She won’t be able to follow the pathway when she’s going through her dance examinations.”
Her family are now trying to raise £45,000 for groundbreaking spinal surgery in Germany which would still allow the bones to move.
Kathryn said: “This operation tethers the spine together but this changes the way the bones grow so they can grow straighter. They also don’t fuse the bones together and she will still have the movement.
“In the future if she does need more surgery on her back then she can, it keeps her options open.”
The technique, which has been approved in America, is currently authorised at St George’s Hospital in the UK, but is only available for privately paying patients.
The family are travelling to Germany on February 17 to a top spinal paediatric surgeon who will carry out the surgery.
They have since set up a Just Giving page to raise money to pay for the operation, travel and accommodation abroad.
Kathryn said: “All who know our daughter know her biggest passion has always been dance.
“It all started with a toddler in a pink tutu and spiralled into a graceful ballerina – she is continually twirling around, be it in front of the TV, around supermarket aisles or at the dance studios.
“Lily has been terribly brave, she’s coped with it really well. It’s a really hard time being a teenage girl and then to have all the things that you love being made harder for you. It’s also irreversible.
“She’s amazing and she makes us so proud. She’s kind and generous and active.
“She’d love to do something involving dance whether that’s in cruise ships, shows or a dance teacher.
“If every person who reads this makes a small donation it really does add up.”
So far, the family have raised almost £3,000 from supporters, including Made in Chelsea star Georgia Toffolo.
She retweeted the family’s Just Giving page to her 350,000 Twitter followers.
To find out more, visit justgiving.com/campaign/SpinalSurgeryforLily-May.