A local toddler with a very rare disease has begun a long recovery in Penn State Hershey Childrens Hospital after chemotherapy and a stem cell transplant.

Chevy Hockenberry, the 23-month-old son of Lance Hockenberry and Melissa Johnson of Mercersburg, suffers from Hurlers syndrome, a rare inherited genetic disorder that if left untreated, causes death within five years.

People with Hurlers syndrome do not produce lysosomal alpha-L-iduronidase, an enzyme that helps break down long chains of sugar molecules. The long sugar chains build up in the body, damage internal organs and eventually lead to death.

The transplant

Chevy was diagnosed with Hurlers in January, but his symptoms started showing up long before that.

He was always sick, Johnson said by phone from Hershey. Chevy was always in and out of the hospital and had developed pneumonia and mild scoliosis.

Once he was diagnosed, the only treatment option for was a stem cell transplant.

Its not curable, Johnson said. But the stem cell transplant stops the progression.

The stem cells came from donated umbilical cords and Chevys parents because they are both carriers of Hurlers.

Chevy had multiple weeks of enzymes infusion followed by nine days of chemotherapy before the stem cell transplant.

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Chevy Hockenberry, Mercersburg, gets stem cell transplant at Hershey