She Was Diagnosed With a Rare Disease at 1, But Her Father Did Something Amazing to Save Her Life

National   |   Micaiah Bilger   |   Mar 6, 2017   |   9:57AM   |   Washington, DC

President Donald Trump may not have mentioned abortion in his Congressional address last Tuesday, but he did provide a special example of how society should value every human being, no matter what their abilities.

Sitting near the First family on Tuesday evening was Megan Crowley, a young woman with a rare disease who was not expected to survive infancy, Stat News reports. The Trumps also invited Crowley and her family to visit the Oval Office to discuss how better to help people with special needs.

Megan was diagnosed with Pompe disease when she was 15 months old, and her brother later was diagnosed with the same enzyme disorder, according to the report. Desperate to save his children’s lives, their father, John Crowley, began a small biotechnology company to try to cure the disease.

President Trump told Congress:

Today is Rare Disease Day, and joining us in the gallery is a Rare Disease Survivor, Megan Crowley. Megan was diagnosed with Pompe Disease, a rare and serious illness when she was 15 months old. She was not expected to live past 5.

On receiving this news, Megan’s dad, John, fought with everything he had to save the life of his precious child. He founded a company to look for a cure, and helped develop the drug that saved Megan’s life. Today she is 20 years old—and a sophomore at Notre Dame. Megan’s story is about the unbounded power of a father’s love for a daughter.

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Here’s more from the Washington Post:

When Megan was diagnosed with an extremely rare disease as a baby, her father, John Crowley, founded a small biotechnology start-up to try to cure Megan and her brother — an effort that ultimately grew into an 80-person company and helped create the drug that keeps Megan healthy today.

Megan’s affliction, Pompe disease, is exceedingly rare. The course of the disease varies by patient, but it causes children’s muscles to weaken and, eventually, their lungs may fail.

Trump highlighted the Crowleys’ story as an example of innovation and entrepreneurship. But the family’s story also was a beautiful example of the value of people with special needs and the hard work that society should put into giving them the best life possible.

Too often, parents today are encouraged to abort babies who are diagnosed with special needs before they are born – rather than offered support and resources to help their babies live and thrive.

Trump described Megan’s life as a “miracle” and praised her father for his work to save her life. Their story shows society how it should treat every human life, no matter what their abilities.