Harley, 14, suffers from spondylocarpotarsal synostosis syndrome, a rare skeletal condition affecting bone development. Diagnosed at age five, his spine has deteriorated despite a spinal fusion surgery. Currently, his spine twists at a 120-degree angle, compressing his lungs and other organs. This condition has made eating difficult and increased his dependence on oxygen. His mother, Kelly, believes surgery is necessary, but doctors are hesitant due to high risks. The family is urgently seeking alternative treatments, fearing time is running out as Harley’s condition worsens.
"All his organs are slowly being crushed. He has three conditions affecting his spine; one pushes inwards, one forward and one curves to the side. It's twisted around like a tree."
"The operation has too many risks and medics said his lungs aren't strong enough or he could end up paralysed. I am desperate at this point and praying for help."
#spondylocarpotarsal-synostosis-syndrome #spinal-surgery #rare-diseases #health-care #family-support
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