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Member News – Wilmer Eye Institute – Johns Hopkins

2023-12-04 09:29:36

Uniquely Positioned to Tackle the Most Challenging Cases

By age 18, Henry Harten was legally blind, the result of a rare genetic disorder. Meet Henry and the team whose careful collaboration allowed him to see the world clearly for the first time.

Victor Harten’s perfect towheaded baby boy, Henry, was little more than a year old when a Seattle neurologist diagnosed him with Hurler syndrome, a rare genetic disorder characterized by an enzyme deficiency that allows large sugar molecules to build up in all the tissues of the body, causing catastrophic damage and, if untreated, early death.

“After crying for a week, I got on the phone and learned we could arrest his disease with a stem cell transplant,” Victor says. Henry underwent the stem cell transplant — a nine-month process. Afterward, Victor and Henry moved back to Victor’s home state of Texas to be near family.

Henry, now 21 years old, is the spunky veteran of some 40 surgeries to correct the damage to his joints and spine wrought by Hurler’s during his first year of life. But one of the things that bothered him most was yet another common symptom of the disease — cloudy corneas.

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