Mum tells of how bumps scattered on her baby's back led to diagnosis

In family photo albums, Harley Harris beams with bright blue eyes, his parents smiling proudly beside their firstborn son.

That was in 2010, when Kelly and Ben Harris, from Welling in Kent, believed they had a happy, healthy baby boy. Nothing hinted that their world would soon shrink to hospital corridors and invasive surgeries.

But at just 10 months old, Ms Harris noticed small bumps scattered across her son's back - a quiet discovery that marked the beginning of a decade-long medical journey.

Harley was five when he was diagnosed with spondylocarpotarsal synostosis (SCT), an ultra-rare and debilitating condition affecting bone development throughout the body.

At the time of his diagnosis, Ms Harris was told Harley was one of just 25 people worldwide with the illness. Over the last decade, it has caused a severe curvature of his spine, as well as eyesight and hearing loss and acute breathing difficulties.

Now 15, Harley's lung function has fallen to just 25 per cent, and his family have been told there are no remaining treatment options available in the UK.

His only hope - a specialised three-step surgery available only in America, at a staggering cost of £2.5million.

Speaking to the Daily Mail, Ms Harris, 37, described the procedure as Harley's 'last shot' at a normal life, fearing her son - who is in 'agony' every day - is running out of time.

The mother, who has set up a GoFundMe to raise money for her son's lasting treatment, said: 'Harley is so happy. He is such a wonderful child - and I am not just saying that because he is my son. He's just so infectious, so happy and giggly. But life is so cruel.

'Every day he is in pain because of his condition. If Harley even does something simple like going to the toilet, he needs oxygen. We have to bathe him, and we have to wash him.

'We have also had to have an emergency extension built downstairs for Harley because he can no longer use the stairs because his breathing is that bad. He's in a hospital bed because his back is very sore and he's got a specialist chair.

'We now know that he's going to continue to get worse until he passes. So, he wouldn't have long left - unless the surgery in America is performed.

'If not, it's going to be a very cruel and slow passing for Harley due to the pain. It's very inhumane and this surgery is his only shot as well as the only chance of him living and making his 16th birthday.'

Harley received his devastating SCT diagnosis after doctors identified scoliosis in infancy and referred him for further genetic testing.

The condition, caused by a recessive gene, has fewer than 50 documented cases in medical literature. 

Those affected typically develop spinal deformities and may also experience short stature, clubbed feet, and problems with vision and hearing.

While many SCT patients survive into adulthood, most require significant surgical intervention.

Ms Harris said she had long felt 'something was wrong' with her son, but never imagined SCT would be the cause.

She said: 'Very early on, Harley was not meeting any of his milestones and falling very far behind as a baby.

'He was brushed off as a lazy baby. But I knew something was wrong. I used to rub his back to send him to sleep and I noticed it felt bumpy, like there were little balls under the skin.

'He had an X-ray done and this is when I was told he had scoliosis. He was then referred to an orthopaedic surgeon, and the long road ahead to an SCT diagnosis began.

'Harley's DNA was sent to New Zealand for further testing as it was not within the UK's testing remit. At this time as a toddler, he was delayed with walking, talking, and hearing.

'It was through this testing that is when we then found out his SCT diagnosis.'

For the past decade, Harley's SCT has been treated at Great Ormond Street Hospital in London and Evelina London Children's Hospital.

In 2018, he underwent anterior spinal fusion surgery to correct the curvature of his spine at Great Ormond Street after being told the SCT was crushing his internal organs.

However, Ms Harris says he began experiencing worsening breathing difficulties and a rapid overall decline in health afterwards, including severe pain.

She said: 'After the operation - which was meant to aid his spinal curvature - we were told that he was in a "very, very bad way".

'The surgery was unsuccessful and we were told Harley could not be helped anymore.' 

A spokesperson for Great Ormond Street Hospital said they are 'very sorry to hear' that Harley's family weren't happy with the care he received and added they had contact with the Harris family about their concerns. 

But for Harley, this was only the tip of the iceberg of his health concerns. 

Ms Harris said: 'To add to the failed surgery, lung function tests showed Harley's breathing had been deteriorating rapidly for years.

'By 2024, his lung function had dropped to just 27 per cent. By then, the damage was catastrophic.

'We walked out of that appointment crying - it was absolutely horrendous and awful.

'Shortly after, we saw an orthopaedic pediatrician for a second opinion. He said the same thing, 'I can't help him. It's out of my hands.'

'However, he told us about his colleague in New York - a spinal surgeon. He said, 'if anyone can save your son, he can.'

'That gave us hope.'

Ms Harris contacted the surgeon - Dr Lawrence G Lenke - an orthopaedic spinal specialist at New York Presbyterian Hospital, about Harley's case in late 2025.

In January, Harley's case was accepted by the hospital - which Ms Harris described as the 'miracle' she had been praying for.

The complex surgery aims to correct the damage to Harley's spine and improve his lung function to restore his quality of life.

It would be carried out in three stages over four months, followed by intensive rehabilitation - meaning Harley's entire family must travel to and remain in the US throughout his treatment.

The only catch - the hospital has quoted the family a staggering £2.5million for the procedure, prompting Ms Harris set up a GoFundMe to raise the funds.

Ms Harris said: 'This surgery is the miracle that we have been praying for. The team in America said they can restore Harley's lung function - something we were told was impossible before.

'However, a few days after speaking to the surgeon in New York, we were told the bill for his surgery was over £2million. 

'When I spoke to people about this, I was very honest and said – I can't do that. Who on earth has the resources to fund that?

'It just seems like an impossible task for me to be able to achieve. If I could give Harley my own lungs, I would, but it's not that simple.

'We aren't giving up, though.'