What rare condition does Harley Harris have?

Harley Harris has spondylocarpotarsal synostosis, a rare genetic skeletal disorder diagnosed in 2015.

Why does Harley Harris need surgery in America?

Harley's condition has led to critical lung function decline and spinal issues, with UK specialists deeming him inoperable. A US surgeon has devised a plan for three life-saving surgeries.

How much money is needed for Harley Harris's surgeries?

The family needs to raise £2.5 million to cover the cost of the three required surgeries in America.

Home / Health / Teen's Rare Condition Sparks Global Fundraising Plea

Teen's Rare Condition Sparks Global Fundraising Plea

1 Feb

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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.

Teen's Rare Condition Sparks Global Fundraising Plea

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.