John and Aileen Crowley’s daughter, Megan, was 14 months old when doctors said she could leave her life. This little girl was diagnosed with a rare genetic disorder called P.o.m.p.e disease. This disease mainly affects the liver, heart, and muscles, and caused muscle weakness as well as trouble breathing.
Aileen said: “We were told she would not survive past the age of two and there was really nothing we could do. And to enjoy time with our daughter,”. However, the doctors underestimated baby Megan’s fighting spirit — and the lengths her father would go to give her a chance at life.
Information on the P.o.m.p.e disease was limited in 1998, but that didn’t prevent baby’s dad John from diving into the pharmaceutical industry and co-founding Novazyme Pharmaceuticals. His company was responsible for creating the experimental drug that ultimately saved Megan and her younger brother, Patrick’s life.
Wall Street Journal reporter Geeta Anand featured the family’s story in her book named “The Cure: How a Father Raised $100 million – and Bucked the Medical Establishment – in a Quest to Save his Children,”. The book was later made into the movie “Extraordinary Measures”. However, no article, book, or movie ever really featured Megan’s unique perspective. That’s what inspired the young woman to create her blog named High Heeled Wheels.
After all, the determined woman has a lot to share.
She said: “No is not a word that I like to hear; it’s not in my vocabulary,”. Every time someone has told her she can’t, the woman’s proven them wrong. She has not only blown decades past her second birthday, but she graduated from high school on time and went on to study at the University of Notre Dame. She graduated with a double major in Film, Television, Theater and American Studies this year. And during her time there, the woman served as president of the Make-A-Wish club. Her professors say they learned from her.
Megan can’t breathe on her own, walk or eat because her muscles aren’t strong enough. She can barely open her mouth to speak. She still talks with what she calls an “underwater” effect. She has a tracheostomy tube, a permanent feeding tube, and requires around-the-clock nursing care. She loves shoes and also does so much more than survive. She’s living her best life and has many plans for the future.
Megan shares she hopes to “move to Raleigh (N.C.) and work for the Muscular Dystrophy Association or Make-A-Wish in communications or media. She continues “I do want to get married and I want to have four children, two via surrogacy and two from adoption. Ultimately I just want to live a happy, healthy, and meaningful life.”
“I wanted to let people with disabilities, those who have had them for a long time and those newly diagnosed, that it’s not a death sentence, that you can live with disabilities, and that you can have a happy life.” She added.
Source: https://www.inspiremore.com/megan-crowleys-pompe-miracle/
