Harley Harris, 15, is just one of 25 people in the world to be diagnosed with spondylocarpotarsal synostosis, a skeletal disorder impacting his bones and spine, now his family are fighting to save him
For many 15-year-old boys, their days consist of running about after mates, playing football, and getting into mischief – but life looks pretty different for Harley Harris.
In 2015, Harley, then just a young boy, became one of just 25 people worldwide diagnosed with an incredibly rare condition called spondylocarpotarsal synostosis. The rare genetic skeletal disorder impacts the development of bones throughout the body and can lead to lordosis, an abnormally curved lower back, scoliosis, curving of the spine to the side, and kyphosis, abnormal curvature of the spine at the top of the back.
Now, Harley, who loves football, dancing and music, has been left in urgent need of an operation not available in the UK. But time is running out for the teen as he has been left with just 25% lung function after his lung collapsed following an operation to try and fix his spine. Without the surgery, his mum Kelly, from Welling, Kent, told the Mirror he faces “a very slow and painful passing.”
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At the same time Harley was diagnosed he was referred to a spinal orthopaedic team in London who monitored him for around 10 years. When he was first measured in 2015, the scoliosis was 39 degrees, and according to Kelly “as time went on, it gradually got worse”. Then in 2017 she said the family were “told he would need an anterior spinal fusion”.
Harley had the surgery the next year, but Kelly said “unfortunately the surgery worked against us and he was declining rapidly.” In 2020, Kelly “noticed a decline in his breathing”. She said: “He got off the trampoline with his brothers and he was very out of breath, and I asked what was wrong, and he said ‘I don’t know mummy, my chest hurts’.”
Kelly rang Harley’s spinal team and their local paediatrician to take a look, but said the paediatrician said she couldn’t see any indications of a collapsed lung or chest infection but contacted the spinal team who said they needed to see Harley urgently. He was then referred to a respiratory team who monitored him and carried out tests for the following three to four years.
In August 2024, the family found out Harley’s lung function was down to 27% – a lung function of 50% and below is classed as ‘severe impairment’. Harley had to undergo numerous tests after this to ensure his body was strong enough to withstand surgery. But, Kelly said: “It wasn’t until they did the X-ray and I saw his spine, and if he wasn’t in front of me I would’ve been on the floor.
“It was horrendous, I was devastated. I was being told it hadn’t got worse, and I was like ‘how are you telling me it hasn’t got worse?’ It was horrendous. For years we asked for surgery and we were told there was no evidence for it, and a week later we got the phone call to book him in for surgery. I felt blood rush out of my face, I felt it wasn’t right. I needed to do something else so I needed to get a second opinion on Harley’s case.”
In October that year, the family went to the Evelina London Children’s hospital after researching, they found Jonathan Lucas, a scoliosis and spinal specialist. Kelly recalled: “We went there very optimistic – ‘second opinion, let’s see what he says and make a plan’. He did an examination on Harley and then asked him to leave the room with one of the nurses and said he doesn’t think Harley should hear this.
“He told us Harley’s scoliosis curve was 120 degrees and that Harley was in an extremely bad way and that he wasn’t sure that he could help him or if there was much they could do to help him because the surgery that had been done, they used part of Harley’s own bone to fuse his spine rather than steel rods, and that had worked at such force it was like a concrete mass in his spine.”
In order for Mr Lucas to make a decision he needed to carry out tests on Harley, and in the meantime, the family sought a second opinion with respiratory at the Evelina. They got their evaluation in February 2025, and Kelly said it was “another moment I’ll never forget.”
“We walked into the room and the consultant, who had been doing it for 25 years, looked at Harley’s images and started crying,” she said. “I said ‘I appreciate you’re very passionate about your job, but please try not to cry in front of him because we try not to because he picks up on that sort of thing’. She said ‘this is the worst case of respiratory failure I’ve ever seen in my career’, so that’s another blow for us.”
Over the summer, Harley’s lung function was said to be just 25%, meaning he needed a BiPAP ventilation system that breathes in and out for him as he sleeps because his lung function was “so bad his organs weren’t getting oxygen”. He also needed to start using oxygen, as Kelly said “everyday tasks are so extremely tiresome for him”.
“We had to learn overnight how to go from being parents to doctors and nurses for our own child, which, knowing what he was like a few years ago is just heartbreaking,” she said. “He’s always been told ‘you’ll always need one final fusion with rods’ in spinal appointments, and he was always aware of that, and then being told ‘we don’t think we can operate on you’ is heartbreaking to tell him.”
Kelly began posting Harley’s story online hoping to try and create the ultimate 15th birthday party for him. So, she posted her idea and she said: “It went crazy, every day people were like ‘I want to be there’. So we had 30 craft stalls, 20 bouncy castles and inflatables, a coffee van, ice cream van, burger van… it was huge, it took up a whole field and tennis court. It was a wonderful and beautiful day.”
Spurred on by supporters online, the family decided to seek a private opinion, choosing Mr Sean Molloy at the Royal Orthopaedic Hospital. But, it wasn’t exactly the news they were hoping for. The family sent over Harley’s images, with Kelly saying: “He took one look at it and said ‘I’m sorry to see your son’s in this stage, he’s not in a very good state. Unfortunately I can’t help you’.”
But, there was a ray of hope. Kelly said: “He said if anyone can help you it’s my former colleague Dr Lawrence Lenke. So, of course, I did my research and he’s a remarkable man. I’ve watched some of his videos of children who are one hundred times worse than Harley and he’s saved their lives.”
While they were waiting to hear back from Dr Lenke’s team, Kelly and the family found out that the team at the Eveline hospital “deemed him inoperable”. Harley’s case was taken nationally, with other hospitals brought in to consult on his options. But they all came to the same decision, there was nothing they could do.
“They told me on this day that I needed to prepare myself, because Harley is going to continue to get worse. He will need full time ventilation and oxygen, he will need a tracheostomy, so I will no longer be able to hear his beautiful voice. He won’t be able to eat for himself, he’ll be on a feeding tube – he loves his food, he can’t eat much any more because his stomach’s squashed, but he loves his food. It’s going to be a painful and slow passing.”
By the end of 2025, Kelly and the family still hadn’t heard anything from Dr Lenke, and she said: “I was like this is the hand we’ve been dealt, there’s nothing else we can do… So I spent Christmas, usually I really love Christmas, I get overexcited with decorating the house. But I was so depressed this Christmas. I thought this is the last Christmas I’m going to have with him. He’s our first child, we’ve had 15 Christmases with him, he made us parents. On Christmas Day he had to be on oxygen just to open his presents.”
There was a glimmer of hope for the family in the New Year, as Dr Lenke’s team arranged a video call with Harley and his family. Kelly said: “The first thing he said to me was he can help him, and I was like oh my god, no way. I pray every night, and I’ve been praying for the miracle that he can help him because he’s the only person who can help Harley, and for him to say that and he’s devised a three part plan for how he was going to help Harley, and I thought this is amazing.”
Kelly had done her research into Dr Lenke, and said she saw “children who were worse off than Harley” and just knew “if anyone could help him, it’s this man.” She explained: “He believes he can save Harley’s life, he says he can give him back lung function which, over here they say isn’t possible because the operation he had in the UK unfortunately had left him with a collapsed right lung.”
The family were “over the moon” and she began posting more of Harley’s story online, gathering followers rapidly. But, Kelly says: “We weren’t oblivious to the fact we were gonna have to pay for this, and it’s in America.” The family researched the private cost in the UK and saw it would be around £200,000 for one operation to fuse his spine. But the actual quote left her floored and heartbroken. The family would need to come up with £2.5 million to cover the three surgeries.
“I was heartbroken, I didn’t know what to do. I was sitting next to him (Harley) in his bed, and I broke down. The total was £2.5 million, who has that? That’s just for the surgery, let alone the flights and hotels and everything. I got so down and depressed.” But the power of social media pulled together, and in the space of five days, the family’s TikTok account went from 1,200 followers to “like 55,000”. Kelly said: “Someone created Harley’s Army and they said you’re not alone any more and we’ve got your back and Harley’s back. I find it very fitting them saying they’ve got his back, so I didn’t give up, and every day we’ve been posting as much as we can.”
TikTok star Spudbae joined in on the cause, promoting an event at Bexleyheath to raise awareness for Harley’s story. And Harley’s even been given the opportunity to watch his favourite team, Tottenham Hotspur, in a box and enjoy a cup of tea with his favourite player James Maddison. Kelly explained: “Harley’s obsession is a cup of tea, every day he’s got to have a cup of tea and his custard creams, gotta be from Marks and Spencer. He’s like a little old man.”
“Every day we’re talking to [Harley] and saying ‘you’re going to have a cup of tea with James, don’t forget your custard creams!’,” she added. Kelly admitted that she’s just doing what “most parents” would do, but she said: “Our community is really coming together to help Harley, and for the first time in his life, I feel we are being heard.
“People will see his story and see he’s brave, a fighter. He’s had so many operations, people keep asking how many he’s had and I can’t count, 15 to 20 operations, they’ve been awful to go through and traumatising, but I see how whole life he’s been fighting and building up to this point for the fight of his life, but if anyone deserves to live it’s him.”
She added: “He’s in pain every day, but never complains. He’s such a joy and a bright light in any room, he’s just always happy even though he’s hurting, such a beautiful character making others laugh. We can’t be sad in front of him because he picks it up straight away, so we have our moments on our own.”
She described Harley as “so full of life still”, adding: “He’s been robbed of so much. He can’t play football or dance any more, he loves music and singing, and people keep saying let’s get Harley dancing. People want to see Harley dance again. I’m just very hopeful, all I can do is pray and keep talking about him and show him to the world, and how strong he is, and how much he’s fought, and just hope that we can somehow get there, believe that we can get there and try.”
“He wakes up every day and he doesn’t complain, but he says ‘mummy, am I going to get my back fixed?’ I won’t promise that any more, because he was promised that for years, and I won’t lie to him, but I keep telling him ‘you keep fighting’ and mummy and daddy will always fight for him and that’s what we keep doing.”
Dr Lenke has told the family he needs the operation by April as “his spine is getting worse and the longer you leave it the less chances of it being a successful operation, and the more function he could lose. But if we leave him, he’s going to suffer a very slow and painful passing. He doesn’t deserve that, he deserves the chance of life.”
To learn more about Harley’s story and how you can help his family click here. See the family’s updates here.
