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- In 1998, when Megan Crowley was fifteen months old, she was diagnosed with a rare form of muscular dystrophy called Pompe disease. Her brother Patrick, who was seven days old at the time, was diagnosed four months later. Pompe disease is a genetic disorder caused by a deficiency in the enzyme that breaks down glycogen.
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Megan Crowley, a rising junior at Notre Dame, is putting her best foot forward to develop her personal brand online in a blog called High Heeled Wheels that documents her life and its challenges and triumphs as a person living with a rare disease called Pompe.
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Jan 30, 2019 · On a Friday the 13th some 20 years ago, 15-month-old Megan Crowley was diagnosed with Pompe disease. A few weeks later, so was her newborn brother, Patrick. Even the doctor who diagnosed the two children didn’t know much about the disease. Before that March day in 1998, he had never treated a patient with Pompe.
Mar 1, 2017 · Crowley was diagnosed with the disease when she was 15 months old, and was not expected to live past age 5. Her brother also has Pompe disease, and their father went on to found a company —...
In 1998, two of Crowley's children, Megan and Patrick, were diagnosed with a severe neuromuscular disorder glycogen storage disease type II, also called Pompe disease. In the face of the children's deteriorating health, the family moved to Princeton, New Jersey to be close to doctors specializing in the disease.
Nov 29, 2019 · At 15 months old, she was diagnosed with Pompe disease, a rare genetic disease that prevents her body from breaking down sugar. The disease has deteriorated her muscles and organs, leaving...
- Myah Ward
Aug 28, 2016 · In 1996, John Crowley’s two youngest children were given what doctors considered a death sentence when they were diagnosed with a rare, fatal illness called Pompe disease. So he came up with a ...
He helped develop two drugs to treat Megan, Patrick and others with Pompe disease, which causes heart and skeletal muscles to waste away. The Food and Drug Administration approved the second...
