Doctors Said She’d Die Before High School. But She Wanted to Go to College.
Diagnosed with a deadly genetic disease as a child, Megan Crowley wanted to do more than just survive it. She wanted to live a full life.
When your father starts a drug company that saves your life and gets featured in a Hollywood film starring Harrison Ford, it can be hard to step into the spotlight on your own.
Especially when you’re in a wheelchair and have a tracheostomy tube for breathing. And when muscle weakness limits your voice strength and your ability to open your jaw more than two centimeters. And when you attend his alma mater.
But Megan Crowley, a rising junior at Notre Dame, loves shoes. So she’s 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.
In separating from her parents to forge her own identity, Megan is just like any other college student. In practical matters, she is completely unique – her father proudly notes that she faces the most physical disabilities of any student to ever go to Notre Dame.
But there is a vast difference between the obstacles others see and the vibrant life Megan displays in person and through her blog. Despite numerous magazine articles, two books and a movie about the Crowleys’ extraordinary journey, Megan decided it was her time to speak up.
“The books and the movie showed my parents perspective on things, and I wanted to have my perspective out there,” she said. “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.”
With the help of accessible facilities and a team of nurses, Megan participates in the fullness of the Notre Dame experience. She goes to classes, studies, goes to games (basketball is her favorite, but the pageantry around football makes it fun too), attends Mass in her Ryan Hall dorm, and socializes with friends. She’s involved in dorm events, hosts a Thursday night TV show viewing in her room, and serves as president of the campus Make-A-Wish club.
There are some limitations. Not every dorm is wheelchair accessible, and many campus social events revolve around food. Megan’s jaw and throat muscles aren’t strong enough to ingest food, so she has a permanent feeding tube. She has 24-hour nursing assistance, many of whom moved with her from New Jersey.
On the other hand, she has had some unique opportunities too. Her room is custom-designed with a remote-controlled door, a separate area for her nurses and a private bathroom with a roll-in shower. She was also a special guest at the White House in February, where President Trump cited her story as an inspiration for rare disease research in a speech to Congress.
Mostly, she’s a media-savvy teen who double majors in Film, Television, Theater and American Studies, speaking out on themes important to her: that she doesn’t feel sorry for herself, that she wouldn’t have her life any other way, that she can participate in more of life than is out of her reach.
In 1998, John and Aileen Crowley learned when Megan was 15 months old that she had a rare genetic disorder called Pompe disease. They had no idea what it was, and in those early Internet days had to scramble for information.
They discovered they are both silent carriers of the disease caused by a gene mutation, which affects the ability of cells to break down the sugar glycogen. The condition leads to progressive muscle weakness and the swelling of vital organs such as the heart, as well as serious breathing problems. There was no cure, and not much time.
The family was living in California at the time, away from friends and family in New Jersey. Their second son Patrick had just been born. He would soon be diagnosed with Pompe too.
“It was a rough time,” Aileen said in an epic understatement.
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.
That fall, Megan went into the hospital with severe respiratory distress. Doctors were surprised she pulled through six weeks in the intensive care unit, and the Crowleys started a foundation to raise money for Pompe research.
John Crowley, a 1992 graduate of Notre Dame Law School who has an MBA from Harvard, took an executive job in the pharmaceutical industry. His desperate search for information on Pompe led him to William Canfield, a glycobiologist researching enzyme replacement therapies.
Crowley and Canfield quit their jobs to co-found a small biotech company called Novazyme Pharmaceuticals in 2000. It was a roll of the dice. The situation was dire enough that Make-A-Wish arranged a Crowley family trip to Disney World.
The following year, the startup’s promising breakthroughs and 80 employees were acquired by Massachusetts-based Genzyme, which had proven success in getting a rare-disease drug through the FDA approval process and into patients’ hands. Genzyme eventually produced a life-saving drug called Myozyme.
On Christmas Eve 2002, the Crowleys learned that their children would take part in a clinical study of the experimental drug. John resigned from his job at the company to avoid any conflicts of interest. Megan likes to say her father gave her life twice. She describes the first treatment in her blog.
“Throughout this whole process, I always told my dad that I wanted my medicine to be pink,” she writes. “When I looked up at the IV pole on that cold January day and saw that it was not pink, I told my dad, “Daddy; it’s not pink.” He responded to me, “No, honey, it’s a whole lot better than pink.”
Megan and Patrick improved almost immediately before they hit a plateau and regressed. But the treatment stopped the enlargement of the heart and saved their lives. About 1,000 people in the U.S. with Pompe today receive bi-monthly treatments after the FDA approved it (now called Lumizyme) in 2006.
A reporter from the Wall Street Journal, Geeta Anand, has chronicled the family’s journey since 2001 and turned it into a 2006 book, “The Cure: How a Father Raised $100 million – and Bucked the Medical Establishment – in a Quest to Save his Children.” It was made into a 2010 movie, “Extraordinary Measures,” starring Harrison Ford, Brendan Fraser and Keri Russell.
Meanwhile, Megan grew into a spirited and gregarious child. Her brother Patrick is more reserved and private. She can control her motorized wheelchair and type on a phone or computer. The hum of the ventilator, a machine that moves air in an out of her lungs, is constant. The G-tube for food, water and medicine must be changed every six months.
“I do not remember not having any of these so I honestly sometimes kinda forget (not really, but it is just second nature to me),” she writes.
“But what I can do outweighs what I cannot do, and that is live life to the fullest!”
She said she is lucky not to have any chronic pain. Her muscle weakness affects her speaking, which she describes as sounding “like I am under water.” Family, friends and nurses learn to understand her the way you catch on to a heavy accent over time.
Megan has 24-hour nursing care and points out in her blog that she’s never been outside of earshot of another person. She used to have nightmares that she was alone and became disconnected from her ventilator, which would lead to death within minutes.
Still, the Crowleys were determined that their kids would live as normal a life as possible. They taught them not to let anything stand in their way, and Megan took the message to heart.
When Megan’s uncle got married in a church without wheelchair access, her mother made the groomsmen carry the 500-plus pound wheelchair up the 15 steps so Megan could be the flower girl.
In the blog, she points out various childhood highlights in the Princeton (N.J.) Public School system: a kindergarten teacher who visited her home every day the summer before she started, a luau-themed graduation party she hosted in 5th grade, the fashion club and prom committee she joined in high school.
She became her own best advocate. When her longtime academic tutor said she would need at least five years to graduate from high school, Megan spoke with her parents and found a new tutor. “No is not a word that I like to hear; it’s not in my vocabulary,” she said. “I wanted to graduate with my friends and to graduate on time. And I did.”
At 16, Megan chose to undergo a grueling procedure and recovery to straighten her spine. She was sagging into her wheelchair, having difficulty breathing, and no longer liked how she looked in pictures. She decided to go forward even though the doctor warned of a 5-10 percent chance of dying from the risky surgeries – and to try again after nearly being paralyzed by a first failed attempt. Patrick vehemently refused to follow her lead.
The doctor screwed a carbon halo into her forehead and hung 10-pound sandbags on pulleys to stretch her spine. He inserted rods along her vertebrae anchored to her hip bones. She was in the hospital for a month but returned home sitting up. “Self pity, sorry to say this, but it’s a wasted emotion,” she said. “Because if you feel sorry for yourself, you’ll never be able to move forward and you’ll always be stuck. I definitely want to move forward.”
Megan got involved as a volunteer and fundraiser for the Make-A-Wish Foundation. John Crowley had become a hero and consultant to many families with rare diseases, and by then he served as the organization’s national chairman.
Rather than a present for her 18th birthday, Megan asked her father to fund the Make-A-Wish request of Gracie West, a New Jersey cancer patient who wanted to visit Pope Francis. Six months later, Megan met Gracie and her mother at another Make-A-Wish event, and they informed her that Gracie had returned from Italy to find she was cancer-free. “They couldn’t find any medical reason as to why…goes to show what one little wish can do,” Megan writes.
By high school, Megan knew that she wanted to go to college, and to leave home and live in a dorm. Her parents were terrified. “We never even dreamed about Megan going to any college, let alone Notre Dame,” John Crowley said. “Getting Megan to kindergarten at the time we thought was the most daunting, overwhelming thing we’d ever undertake as a family. Then think forward all the way to twelve years later, her getting ready to go to college.”
He shakes his head in appreciation of how far she’s come.
She visited Notre Dame for the first time in the fall of her senior year. John said the trip helped her see what made the University special. When the acceptance letter came in April, he watched her hit the send button to commit.
“That was a proud day,” he said. “I think every parent feels that leaving a child at school by themselves, it’s that next level of maturity and independence. But for us, the thought that Megan was still tethered to a ventilator, with a nurse by her side, was reassuring but also pretty scary.”
When Patrick and Shirley Ryan became benefactors of a residence hall in 2009, they knew they wanted it to be wheelchair accessible so women would have the same opportunities as their son. Corbett Ryan, who has cerebral palsy and uses a wheelchair, lived in a Keough Hall room intentionally designed for wheelchair access and graduated in 2005.
The building’s front doors can be opened with a special key fob. Every detail down to the carpet pattern makes life easier for the disabled. The women of Ryan Hall have embraced the family’s intentions by making wheelchair basketball their signature charitable event.
The only time John Crowley choked up in discussing his daughter’s emotional journey was when he spoke of the reception Megan received in Ryan Hall. Aileen Crowley called it “incredible.” About half a dozen times a day, Megan transfers from her bed to her wheelchair. The process requires two people, and only one nurse is usually on duty. Megan spoke with her rector and RA and set up a volunteer schedule herself.
“Notre Dame assured us, ‘We’re telling you, girls will want to jump in and help,’” Aileen said. “We had looked at other colleges and mentioned what Notre Dame said and they looked at us like we were nuts. That’s not going to happen. The first day she was here, there were girls instantly who wanted to help.”
Megan maintains a carefully planned schedule because everyday actions simply take her longer. A shower will take an hour and a half and require a nursing assistant. She has physical therapy once a day to stretch and strengthen her muscles, especially the hands she uses to control her wheelchair and type.
She has developed her own typing style with a pen in her right hand, and she’s surprisingly quick. Note takers in each class augment her own notes, and she has a tutor for each class. “It’s not because I don’t understand the material or I need help writing papers but to make it more time-efficient,” she said. “A normal student can stay up until 3 o’clock in the morning, but I can’t. I would get run down and sick.”
In second semester of her freshman year, Megan took a seminar class with Rev. Monk Malloy, C.S.C., the former University president. Seminar classes are small and require considerable participation in class discussions.
Fr. Malloy said he’s had several students with disabilities in his seminar class, Biography and Autobiography, and they always find ways to overcome any challenges. Megan developed a system where a nurse or a Ryan Hall neighbor would repeat her comments to clarify.
“She was always well prepared, a hard-working student who made unique contributions that overcame any oral limitations,” Fr. Malloy said. “Her papers were excellent, and her final was one of the best I’ve ever gotten. I learned a lot from her.”
This year, Fr. Malloy assigned the book and movie about the Crowleys to his class and invited Megan and her father as guest speakers.
John Crowley hopes Megan’s story can inspire other students to overcome the challenges they face. “We all live with challenges in life, and I think in some ways your happiness in life is directly proportional to how you manage your challenges,” he said. “Megan has done that at a level that most people can’t comprehend, and she does it with a fiery spirit and sense of optimism.”
It’s already working. A blind high school student worried about coming to Notre Dame met with Scott Howland, the coordinator of the Sara Bea Center for Disability Services. Howland told her about how Megan had moved 600 miles from her parents – and that convinced her she could too.
Megan said she started the blog in January in that spirit. Her friends are aware of the blog, she said, and it’s becoming popular in the wider disability community. Her biggest news event hit on February 28.
President Donald Trump invited the Crowleys to the White House as special guests for a speech he gave to a joint session of Congress. Trump called Megan “an inspiration” and said her story was “about the unbounded power of a father’s love for a daughter.”
John Crowley posted pictures on Facebook and wrote about his pride in having “all of our nation’s leaders give your daughter two standing ovations.” He concluded: “And now the world knows our Megan … I knew someday it would.”
While Trump used the story to push for getting rid of regulations and speeding up the drug approval process, Megan opted to leave the policy disputes to the pundits.
“For me, this isn’t about politics: it’s personal,” she wrote. “Really personal. People like me who live with these medical conditions can only win when we raise awareness, raise money for research and raise our voices in unison about the importance of finding treatments for rare diseases.”
Megan has lived up to her words on campus. She has participated the last two years in Saint Mary’s Dance Marathon to benefit Riley Children’s Hospital. “I danced on my wheels (for 12 hours), played games, learned an eight-minute dance, and interacted with the wonderful kids from Riley who came as guests,” she writes.
As president of the Make-A-Wish club, she helped lead the fledgling group’s signature fundraising event on a Friday in late April. The First Annual Variety Show featured 14 acts ranging from standup comics to Irish Dance and from harmony groups to sections of the marching band. The goal: fund the wish of a child with a life-threatening illness who hoped to visit Costa Rica. The crowd was small on a busy Friday night late in the semester, but the group understands that campus events build a reputation slowly. Megan printed up the programs and the group’s vice president created the tickets. “We’ve been working on this all semester,” said Maggie Brecker, the vice president. “We work really well together.”
Megan’s social activities aren’t limited to campus. For her father’s 50th birthday, she asked dozens of his family and friends to record a personal message about what he means to them. Megan combined the clips onto a single video she posted. She called him her “role model” but noted that she also has “a right and a duty to make fun of him whenever possible.”
John Crowley is now chairman and CEO of Amicus Therapeutics, a biotechnology company he co-founded in 2005. The company has developed a second-generation Pompe drug and other medicines for rare diseases, using a molecule as a chaperone to better target delivery of the drug to the defective enzymes. Animal and lab tests, as well as some Pompe patients in clinical trials, have experienced positive results with the new medicine.
“There’s more work to do for sure,” he said.
“We’ve also been proud to be associated with the University and its commitment to the Center for Rare and Neglected Diseases. We think it’s another great extension of the university’s mission.”
Megan as always is optimistic, and she’s making careful plans. Daddy’s girl is ready to roll out on her own. She’s excited for a post-graduation trip to Europe that she acknowledges “will probably be the only time that I will go out of the country” due to the extreme logistics it takes. The adventure will likely require a new pair of shoes.
“I’ve always been a planner,” she said. “I definitely want to graduate from ND, hopefully move to Raleigh (N.C.) and work for the Muscular Dystrophy Association or Make-A-Wish in media or communications. 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.”