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Teen's Rare Condition Sparks Global Fundraising Plea
1 Feb
Summary
- Harley Harris, 15, has a rare skeletal disorder diagnosed in 2015.
- His lung function is critically low at 25%, requiring urgent US surgery.
- The family needs to raise £2.5 million for three life-saving surgeries.
Harley Harris, a 15-year-old boy diagnosed with the rare spondylocarpotarsal synostosis in 2015, is in urgent need of life-saving surgery in America. His condition has severely impacted his spine and, tragically, led to his lung function dropping to a critical 25% after a previous operation.
Originally monitored for a decade, Harley's scoliosis worsened significantly, leading to a spinal fusion surgery in 2018 that unfortunately exacerbated his condition. By 2020, his breathing declined, and subsequent tests revealed his severely impaired lung capacity, necessitating BiPAP ventilation and oxygen support.
Multiple UK specialists have deemed Harley inoperable, with his mother Kelly told he faced a "very slow and painful passing." However, a breakthrough came when Dr. Lawrence Lenke in America devised a three-part plan, offering hope for his survival and potential recovery of lung function.
The family now faces the monumental task of raising £2.5 million for the three surgeries required in the US. Social media has become a powerful tool, with "Harley's Army" rallying support. Despite the immense financial and emotional challenges, the family remains hopeful, inspired by Harley's bravery and the outpouring of community aid.
