Mum of boy with rare spinal disorder to hold fundraiser at Bexley Park Social Club to help fund his only chance of treatment in America

A desperate family are hosting a birthday fundraiser for their son living with an extremely rare condition which is causing his spine to “bend” and “crush” his organs.

Harley Harris, 14, was diagnosed with spondylocarpotarsal synostosis syndrome (SCTS), a rare skeletal disorder affecting bone development, aged just five.

The teen, from Welling, underwent corrective surgery in 2018 but his condition has continued to deteriorate and now his spine has twisted so severely it has “crushed” one lung and is threatening the other.

Harley’s mum Kelly Harris, 36, says her son’s back now looks like “a tree bent by years of wind” and he suffers constant pain and fatigue.

The teen uses oxygen during the day and sleeps with a ventilator at night and is no longer able to do his favourite things like playing football and dancing.

Doctors in the UK have ruled out more surgery over safety fears, but his parents are are pinning their hopes on an American specialist who may still be able to help.

They are planning a birthday fundraiser called Hope for Harley for their son to help raise up to £100,000 for surgery that can’t be performed here but which the believe could ease his suffering and save his lungs.

It’s a huge task but mum Kelly is determined to do anything to help her son.

“He asks when they’re going to fix his back,” Kelly told KentOnline. “It breaks me every time.”

The family fun day, to be held at Bexley Park Sports and Social Club, near Wilmington, Dartford, on August 10, is already gaining lots of attention. A separate GoFundMe page has also been set up which can be viewed here.

The venue has been donated, eight large inflatables are being provided by several bouncy castle companies, and dozens of local businesses are getting involved.

Kelly said Harley loves people, but doesn’t have many friends or opportunities to have fun.

“So I thought, what if we could make his birthday something incredible?,” she added.

“A fun day just for him, and a way to raise funds too.”

The family believes their only hope now is American surgeon Dr Lawrence Lenke, who may be able to help by removing parts of Harley’s fused spine to relieve pressure on his lungs and fit stabilising rods.

They have contacted Dr Lenke’s team and are also applying to Shriners, a US children’s hospital charity that may help with funding and travel.

Despite everything, Kelly says her son remains upbeat and is “a ray of sunshine”.

“He makes everyone smile,” she added. “If I can give him a day where he feels seen and celebrated, and if that day brings us one step closer to saving him, then I’ll be the proudest mum alive.”

Harley is the eldest child of Kelly and partner Ben whose other sons Bradley, 13, and Frankie, six, also have additional needs.

Both parents are full-time carers and can’t afford the cost of the treatment, travel and aftercare Harley’s surgery is likely to cost.

“We’re not perfect, but we’re a strong team”, said Kelly.

“My husband and I hold each other up, and together we’re Harley’s rock.”