Ahmed’s journey of 3,000 miles ends with a single step

If you met Ahmed al-Fardan today, walking with the aid of crutches, you might mistake him for a student athlete recovering from an injury. The talkative 16-year-old recently started college courses at Middlesex Community College, where he’s thinking of starting a pre-med program. And when he’s not in class, his mother Ameera often finds him reading or writing short stories. She says it’s already getting hard to believe that only two years ago, her son was all but confined to a wheelchair. That’s because Ahmed is a lifelong member of one of the world’s most exclusive clubs—he is one of as few as 26 people worldwide to be born with the genetic disorder Catel-Manzke Syndrome. Among other signs, Catel-Manzke Syndrome usually causes cleft palettes, irregular bone formations in the index fingers, an undersized jaw and—in Ahmed’s case at least—a lack of bone ligaments in specific areas of the body. Until 2012, Ahmed received care at Shriners Hospital for Children in Portland, Ore., where his mother had relocated from the United Arab Emirates to study. While his care team at Shriners was able to repair his cleft palette and undersized jaw, it struggled to treat his legs when abnormal bone growth gradually robbed him of his ability to walk for more than a few steps at a time. A string of visits to other local physicians were not any more helpful, but one doctor knew just the place to call—Boston Children’s Hospital, which specializes in genetic conditions aff...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: All posts Source Type: news