Doctors Say Their Baby Won’t Live past Two, So Dad Creates a Drug to Save Her Life

When his daughter was given a death sentence shortly after being born, one father refused to accept the news. He created a drug to fight her disease, and she survived against all odds. 

At only 14 months old, Megan Crowley was diagnosed with a rare disease called Pompe. Doctors told her parents, Aileen and John, that she would not live past two years old. 

This was something they did not accept. Megan’s determination to live surprised doctors and her father’s decision to create a new drug saved her life. John co-founded Novazyme Pharmaceuticals, and the company has done great work.

After doctors told a father his baby was going to die, he created a drug to save her life and now she has graduated from college | Photo: Facebook/John F. Crowley

John managed to raise millions of dollars in his efforts to get the drug up and running, and the family’s story was turned into a book and a movie. Harrison Ford starred in the film “Extraordinary Measures,” which documented the Crowley journey. 

However, despite the widespread coverage, Megan’s views were never featured. This prompted her to start her own blog, High Heeled Wheels. She uses the platform to encourage other disabled people. 

Megan shared that she loves to prove people wrong. Many times in her life, people have underestimated her, and she expressed: “No is not a word that I like to hear; it’s not in my vocabulary.”

The young woman graduated from high school and even obtained a double major in Film, Television, Theater, and American Studies. Megan is also involved in various aspects of her university, including the Make-A-Wish club.

Megan is an inspiration to everyone who meets her; even her teachers say they learn from her. Megan cannot breathe or walk on her own, but she still manages to get by. She stated that she does more than survive, and she is living her best life. 

The young woman has many plans for the future. Not only does she want to work for the Muscular Dystrophy Association or the Make-A-Wish foundation, but she also wants to get married. 

Megan also shared that she dreams of having two children with the help of surrogacy and another two via adoption. She expressed that her mission is to tell others with disabilities that their condition is not a death sentence.

Megan said: “You can live with disabilities, and that you can have a happy life.” This message has encouraged many and online users often praise her for her determination and motivation.  

One user thanked the family for all that they had done. The user said: “Because of what this family did & how hard they have pushed for so many years, people like me, living with Pompe, have hope for tomorrow!”  

Megan is indeed a young woman that has spread lots of positivity in the world. She stated that she simply wants to continue to live a meaningful life filled with happiness, and so far, she is getting it right.  

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