HARLEYS STORY
Hi, my name is Kelly and I’m Harley’s mum.
Harley is 15 years old and was born with a rare condition called spondylocarpotarsal synostosis, which affects his spine, bones, hearing, and growth. Despite a lifetime of countless surgeries and medical challenges, Harley has always been a brave, strong, funny and loving boy. After following medical advice from experts, Harley underwent an anterior spinal fusion in 2018 caused after which he started experiencing breathing difficulties today he is rapidly losing the ability to breathe on his own. His only chance of survival is undergoing lifesaving treatment abroad that will cost over £2,500,000, and we desperately need your help to be able to raise this amount. Here is Harley’s full story:
- - - - - - -
What Happened
In 2018, we were told Harley needed urgent spinal surgery or his organs would be crushed. Trusting medical advice, we agreed. After the surgery, Harley’s health began to decline - severe pain, worsening spinal curvature, and increasing breathlessness - but our concerns were repeatedly dismissed.
Years later, we discovered that yes lung function tests showed Harley’s breathing had been deteriorating rapidly for years. By 2024, his lung function had dropped to just 27%. By then, the damage was catastrophic.
Where We Are Now
After seeking second opinions, we were told Harley’s original spinal surgery should never have happened. The fusion caused such force in he’s chest it collapsed all he’s bronchus and it wiped out his right lung and half he’s left. Doctors described it as the worst case they had ever seen.
In September 2024 we received the most devastating news imaginable: Harley is now considered inoperable in the UK. Surgery here carries an extremely high risk that he would not survive, or would be left permanently ventilated, paralysed, or unable to breathe independently.
Harley is rapidly deteriorating. He now needs oxygen to move around the house, uses a BiPAP machine at night to breathe, and can no longer manage stairs. His spinal curve measures 120 degrees, and his quality of life is slipping away.
Why We Need Your Help
Our only remaining hope is to seek specialist private care abroad from surgeons experienced in complex spinal and respiratory cases. We hoped this would be achievable - but we’ve now been quoted over £2.5 million for the treatment Harley urgently needs.
I never imagined I’d be writing these words. But without help, we are being forced to watch our child slowly lose his ability to breathe, eat, and speak. As a parent, that is unbearable.
Join the Fight for Harley
Harley was a happy, active boy before 2018. He didn’t deserve this but continues to fight every single day.
We are asking - from the bottom of our hearts - for help. Whether through a donation, sharing Harley’s story, or helping us raise awareness, every single act of kindness brings us one step closer to giving our son a chance.
Join #HarleysArmy on TikTok
Harley and I are sharing video updates as often as possible here: tiktok.com/@hope4harleystrengthscts - it would mean the world if you’d follow along and spread the word.
Thank you for taking the time to read Harley’s story. Thank you for caring. Thank you for standing with our family during the darkest time of our lives.
We will never be able to express what your support means to us - but please know that it gives us hope when we are running out of it.
With love and gratitude,
Kelly, Ben and Harley
