Kelly Harris’ son, Harley, 14, was diagnosed with spondylocarpotarsal synostosis syndrome (SCTS) – a rare skeletal condition that affects the development of bones with fewer than 40 cases reported worldwide.
Harley was told he had it aged five and, despite undergoing spinal surgery in January 2018 aged seven to ‘fuse’ the spin and stop it curving, his back has continued to deteriorate.
Harley in hospital (Image: Kelly Harris / SWNS) His spine has now “twisted” into a 120-degree angle – “squashing” his lungs and leaving him dependant on oxygen.
The extreme curve has begun “crushing” more organs including his oesophagus and stomach – leaving him “choking” on food and unable to eat much.
Kelly believes Harley’s only option is surgery to insert rods to straighten his spine, however, she claims doctors are “unable to operate” as the risks associated with it are potentially life-threatening as his lungs could “fail” during the operation.
Kelly and her husband, Ben, 40, Harley’s full-time carer, are desperately trying to find an alternative before it’s “too late” as Harley’s spine continues to curve.
Mum-of-three Kelly, who is not currently working, said: “All his organs are slowly being crushed.
“He has three conditions affecting his spine – one pushes inwards, one forward and one curves to the side.
“It’s twisted around like a tree.
“The operation has too many risks and medics said his lungs aren’t strong enough or he could end up paralysed.
“I am desperate at this point and praying for help.”
She also noticed something didn’t “feel right” while rubbing his back to sooth him to sleep.
Harley was eventually referred to a spinal unit and geneticist – to see if the condition was hereditary – who sent his DNA to a specialist in New Zealand to confirm his diagnosis.
The results concluded Harley had spondylocarpotarsal synostosis syndrome, scolosis, lordosis, kyphosis and fused vertebrae.
Kelly was told Harley would need spinal surgery and rods fitted at some point, and he was monitored with regular check-ups.
By January 2018, aged seven, Harley’s back continued to curve, and he was put forward for an anterior spinal fusion surgery to “fuse” the vertebrae.
Despite the operation going “successfully” Kelly noticed a “rapid decline” in Harley’s health.
She said: “I was constantly raising concerns with doctors.
“He was out of breath getting off the trampoline and going up stairs.
“I had a gut feeling he was getting worse.”
After many “inconclusive” tests on his lungs, doctors eventually found Harley’s lung function was less than 25% due to the spine “crushing” his lungs.
In August 2024, medics suggested Harley undergo more spinal surgery but Kelly said tests on his lungs suggested they wouldn’t “cope” under the anaesthetic and could “fail” during an operation.
“I saw an updated photo on his spine, and I nearly cried,” she said.
“We had to get Harley to leave the room.
“The new respiratory doctor said in 20 years of practicing, it was the worst case she had ever seen.
“The operation he needs – but can’t have – could take up to eight hours, his lungs could fail under the sedation or not work afterwards.”
Harley’s spine is now at a 120-degree angle, and Kelly believes it is affecting other organs as well as the lungs.
Harley is the eldest child of Kirsty and Ben and lives at home with his siblings, Bradley, 13, and Frankie, six.
He now needs constant oxygen and a CPAP machine at night to breathe and the family is building an extension as he can’t use the stairs anymore.
Kelly said: “I’ve been back and forth to doctors – we’ve finally been told they won’t operate due to the risks.
“Harley is constantly asking ‘mummy, when are they fixing my back?’.
“He’s choking on food and can’t eat much, and he’s passing urine more.
“His spine is crushing is oesophagus and stomach, and his bladder.
“He is so much pain, and it breaks my heart.
“Despite everything, he is such a happy little boy.
“We don’t know to do – but we’re praying a private specialists can help or other an alternative.
“I won’t stop until he gets help.”
