A family from Welling are in a “desperate" race to raise money for life-saving surgery for their son born with a rare condition.
Harley Harris, 15, lives with spondylocarpotarsal synostosis syndrome (SCTS), a very rare skeletal disorder that affects bone development.
Diagnosed at just five years old, Harley underwent corrective surgery in 2018 but his condition has dramatically worsened over time.
Kelly Harris, Harley’s mother, said: “He’s gone from being this big, bubbly personality to a child that just sits in bed all day, because he’s either in pain or out of breath.
“He can’t move like he used to, and watching that happen to your child is heartbreaking.”
After months of thorough searching and consultations with doctors and specialists across a number of hospitals across the UK, the family were dealt a “devastating” blow when they were told that his condition was inoperable.
However, the family received a “new hope” after being referred to Dr Lawrence Lenke – a specialist in complex spinal conditions based in New York.
Following months of consultation between Dr Lenke’s team and the family, the specialist delivered the news the family had been praying for, outlining an extensive three-part surgery plan to straighten his spine.
The proposed surgery is designed to stop the progression of Harley’s severe scoliosis and relieve pressure on his lungs.
The plan includes halo traction therapy to gradually realign his spine, followed by surgery through the ribs to create space for correction.
A final vertebral column resection will also be carried out, a specialised operation in which sections of the fused spine are removed so it can be straightened and stabilised with metal rods.
It is believed the procedure could prevent further deterioration and improve both Harley’s quality of life and lung function.
Kelly told News Shopper: “For the first time in Harley’s life, I feel like we could possibly get him the help that he so desperately needs.
“It’s given us so much hope for the first time, knowing that someone can help him and can save his life.”
However, this treatment will be at a huge cost, so the family are now facing “another barrier”.
In an update posted on the GoFundMe page - gofundme.com/f/r5qyz-hope-for-harley - on Friday (January 16), Kelly wrote that they were being quoted more than £2million as a cost for the treatment.
Taking to social media, Kelly shared a video to TikTok account @hope4harleystrengthscts to raise awareness of her son’s life-threatening condition, which went viral, garnering more than 850,000 views.
It led to an influx of support, raising £20,000 in just four days, which has since increased to more than £36,000 so far.
“It’s been an emotional rollercoaster,” Kelly said.
“For the first time, I feel like I’m being supported by so many people.
"I finally feel like we’re getting somewhere.”
@hope4harleystrengthscts Please help save my son before it’s too late the uk have deemed him inoperable after a top london hospital did this and ignored our pleas for help the are saying they can’t help and to leave Harley if we do so he will get worse till he is no more?However weve found a surgeon dr lenke in New York who is certain he can save Harley and get him better without this harley will suffer a slow and painful passing he’s lungs will fail leaving him on full time ventilator and tracheotomy he will have to be tube fed he’s spine will fuse to he’s rib cage! Dr lenke has told us we have till spring please if you can follow and share Harley’s story we need your help #HopeForHarley #lungdisease #disabledchild #prayer #scoliosis ♬ original sound - HopeForHarley
In an emotional message addressing her audience on TikTok, Kelly said: “My son’s being squashed to death by his own spine.
“My son needs urgent spinal surgery before it’s too late.”
The family have been told that Harley needs to receive treatment by spring this year before his condition gets any worse.
For the family, the race is on to raise the vital funds for Harley’s surgery, with time being of the essence before his condition deteriorates.
Kelly said: “Without this surgery, Harley will continue to get worse.
“All of his organs that are already squashed will continue to be squashed until he is no more, it would be a very slow and painful passing.
“If I don’t try, I’ll forever be asking myself, ‘What if I had tried?’, and I just can’t live with that.”
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