How One Boy with Pompe Disease Defied the Odds

Author Douglas Adams once said, “I love deadlines. I like the whooshing sound they make as they fly by.”

Deadlines are a strange thing. Sometimes, a doctor will give you a prognosis that seems to be a deadline. Some people will see this as a death sentence and will lose the will to live before they lose their actual lives. Others will see this as a due date; they will try live life to the fullest before it passes. Hopefully, the children diagnosed with Pompe disease fall into that latter category.

Pompe disease is a genetic disorder that is the result of an excess of a certain sugar (glycogen) in the body’s cells.

The muscle cells are not able to function properly, which severely restricts the abilities to speak and move. Often, the form of Pompe disease that sets in early in life will cause death within the year. For others, the life expectancy may be as high as 35.

When Ismail Patel was born, he was given a deadline. His deadline was part of his diagnosis with Pompe disease. Ismail was diagnosed early, but the doctors were hopeful that with treatment, he might live to be eight.

Whoosh. That was the sound of Ismail flying by his deadline. While doctors go to school for a very long time and learn an immense amount of information, they do not know everything. Ismail is proof of his doctors being wrong.

He will graduate from secondary school this spring, and he plans to enroll in college to study business. He needs breathing and feeding tubes. He uses a motorized wheelchair to manage getting around. He has received all kinds of assistance from his family, teachers, and classmates. For all that help, Ismail is eternally thankful. And here he is, continuing to defy the odds with every day that he keeps going.

To learn more about Ismail from a short piece on him done by the BBC, click here.


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