GREENVILLE, S.C. (FOX Carolina) – Two Greenville families are navigating one of the rarest diagnoses a parent can receive — and they are doing it together.
Both families learned their sons had Hunter syndrome, a rare genetic disorder, during the same week in March. Their boys are now among the first children to receive a newly FDA-approved treatment at the Prisma Health infusion center.
What is Hunter syndrome?
Hunter syndrome, also known as MPS II, prevents the body from producing enough of a crucial enzyme that helps break down certain complex sugars. Without that enzyme, sugars build up in cells and can damage organs. In severe cases, the condition can affect the brain and lead to developmental delays.
“JT was diagnosed with MPS II, also known as Hunter syndrome,” mother Hannah Burgess said. “JT has neuronopathic Hunter syndrome, so it’s a more severe early onset type that affects the brain.”
Diagnosed the same week
Another Greenville mother, Marie Laiewski, received the same diagnosis for her son James during the same week JT was diagnosed…