Hi my name is Kelly, my son Harley Harris is 14 years old he was born with a rare condition called spondylocarpotarsal synostosis which he has scoliosis, lordosis, kyphosis, fused vertebrae, fused carpal and tarsal bones, profound hearing loss, short stature. he’s been under hospitals all he’s life however in 2018 gosh told us Harley needed an anterior spinal fusion otherwise he’s organs would be squashed. However soon after we started noticing a decline in Harley’s health he was in a lot of pain he’s curve had visibly shifted yet we was dismissed and ignored which progressed to shortness of breath l. Harley was also under respiratory from 2020 where he did 6 monthly spirometer tests which they said was always inconclusive fast forward to January 2024 Harley had declined rapidly to the point of going up the stairs he was out of breath so I’d had enough and put a complaint into the hospital and low and behold they had results from the lung function tests which showed that 2021 he had 56% and 2022 he had 44% and now in 2024 he had a shocking 27% lung function!
this along with me raising this to spinal they suddenly tried to get Harley in to fuse more of he’s spine something didn’t sit right so I asked for a second opinion on both respiratory and spinal we chose the evelina.
the doctor said Harley’s case is extremely complex that he’s spine shouldn’t have been fused and he should have had rod’s inserted and that where he’s spine was fused it had worked as such a force it had wiped out he’s right lung and half he’s left and shut down he’s bronchus causing catastrophic damage we was told also by respiratory that it was the worse case the doctor had ever seen and that the only was to stop the progression was spinal surgery however that came with major risks of Harley’s lungs completely collapsing never to inflate again and he could pass away on the operating table.
yesterday we had a call with the hospitals decision that they feel Harley’s inoperable and if they was to preform spinal surgery on Harley the likelihood is that he either won’t make it out of theatre he will be permanently on a ventilator or tracheostomy or paralysed. We are devastated by this news the only option they said is to take Harley’s case nationally of which the contact hospitals all over the uk in a hope one with more expertise can take on Harley’s case this is only done in extreme life threatening cases.
the only issue is this is going to take even longer and Harley’s deteriorating rapidly he’s on oxygen to move around even going to the toilet he’s out of breath he’s now on bpap which is a breathing machine whilst he sleeps as he’s levels of oxygen and c02 drop so low he’s also currently having an extension built as he can’t manage the stairs anymore he’s curves measured at 120 degrees but that’s just the scoliosis.
so we are hoping that we can seek private medical care for Harley and pay for a surgeon that’s more experienced in such complex spinal and respiratory issues to help save our son as we are running out of time and he’s rapidly declining all money raised will go towards getting a private opinion and hopefully surgery for Harley which at its lowest is £20,000 so please if you can help us it would mean the world to us our son has been so let down all he’s life this is so wrong but right now we desperately need your help xx
