Megan Crowley is never alone. She never can be.
It would take just one tube being detached. One part of her ventilator to malfunction. And if that happened, and a nurse didn’t hear it, she could die within minutes.
Megan doesn’t mind being with someone 24 hours a day. She prefers it.
It’s the only way the 22-year-old ever remembers living. At 15 months old, she was diagnosed with Pompe, a rare genetic disease that prevents her body from breaking down sugar. The disease has deteriorated her muscles and organs, leaving her in a wheelchair.
Megan has a tracheostomy tube for the “minor breathing issue” as she calls it. The constant sound of her ventilator adds another layer to her already weakened voice. She says she sounds like she’s underwater.
She can move her hands and feet, but she’ll never be able to stand up and walk. Her lungs aren’t strong enough to work on their own, and she can’t hold her breath — the main reason she’ll always have eyes on her.
“I don’t know anything different,” she said. “It’s my normal.”
She’s most definitely not a morning person, but she gets up every day just like everyone else.
With the help of a nurse, she brushes her teeth and gets dressed for class. Her nursing assistant does her makeup and combs her hair. She has her breakfast through a feeding tube as she does every meal. Then she’s loaded into the car with a nurse and heads over to the UNC School of Social Work where she’s getting her master’s degree.
Megan’s already graduated with two degrees from Notre Dame, and even those close to her have questioned why she wants more. But Megan has been defying expectations her entire life.
Beyond the layers of medical equipment, Megan has pink sparkly fingernails. She bought a shirt for herself that says, “classy, sassy and a bit smart assy” — the epitome of Megan, her mom, Aileen, said.
“If you piss me off, you’re going to know about it,” Megan said. Her nurse Giovanna Torres nodded and laughed.
“She advocates for herself,” Torres said.
She’s always had to.
At a year old, Megan wasn’t pulling herself up like most babies do. She was having respiratory issues, and she wasn’t crawling.
“She should be on the move by now,” her mom remembers thinking.
At 15 months old, just days after her younger brother Patrick was born, the Crowleys got their daughter’s diagnosis. They were told her new brother probably had Pompe too.
It was their horrific new reality: two children who probably wouldn’t live to be 3 or 4 years old. The doctors told the Crowleys to enjoy the time they had with them, and they were sent home.
Megan’s dad, John, started calling doctors. He combed through the internet for answers and would later leave his job in finance for the pharmaceutical industry. He was on the hunt for a cure.
At 18 months, Megan was put on a ventilator, and Patrick wasn’t far behind. Aileen stayed home with her three children, two of them on life support.
It was too much to handle, and they hired nurses to help.
“There were days we didn’t know how long they had, but we were going to make what time they had good for them,” Aileen said. “We were going to let them have a normal life,”
That meant packing Megan into a shopping cart at the grocery store with loads of medical equipment. It meant registering her for preschool. It meant advocating for her to be in a normal kindergarten classroom, even when the school wanted to separate her from the other kids.
“People thought I was nuts,” Aileen said. “And I’m like, ‘No, she’s going to a grocery store, and she’s going to kindergarten, and that’s just how we’re going to do it.’”
Good news came when Megan was 5. The siblings were approved to receive their first infusion of Lumizyme, what many called the cure. Megan was able to sit up by herself for the first time.
Her strength eventually plateaued, and Aileen continued to navigate their version of normal, which often meant “doing it big.” In the back of her mind, she couldn’t escape the suffocating thought that this could be the last birthday or the last Halloween.
She decorated their basement as a haunted house and had the neighborhood kids over. She threw a sweet 16 birthday party that Megan will never forget.
Megan still lives this way. She’s always on the move, traveling for weddings and going to concerts and plays. Torres said she lives life better than people “who have full capabilities.”
“Why would I just sit in my room?” Megan said. “I don’t have to.”
Megan’s choice to go to Notre Dame wasn’t entirely hers.
Her dad, a Notre Dame Law alum and a big fighting Irish fan, knew it was the right choice for Megan. But their fragile daughter used to be right down the hall. Now she would be over 10 hours away, her life in the hands of her nurses.
It wasn’t an easy transition for Megan. She was homesick, failing classes and struggling to make friends. It’s hard when Megan meets new people. They don’t always know what to make of her at first. Some assume she has a mental disability, though her brain moves much faster than her body.
People can’t always understand her weakened voice, and she’s forced to rely on her nurses to translate.
“She has to rely on these people to be her voice sometimes, and I know that’s hard for her,” Aileen said. “It would be hard for anybody.”
Even when she did make friends, small things became obstacles. Like the time Megan, her nurse and her new friends trekked across campus to a party. They had to turn around when they got to the building and saw Megan’s wheelchair couldn’t make it up the steps.
“You guys go ahead,” Megan said to her friends.
But Megan stayed. She took classes year-round for four years to finish two degrees in film, television and theater and American studies. She joined the Make-A-Wish club, helping wishes come true for kids facing critical conditions.
She made friends like Julia Forte. She’s a year younger than Megan and met her during Welcome Weekend at Notre Dame. She was drawn to Megan’s enthusiasm.
She can’t pinpoint when their friendship budded, but she said they would talk for hours and jam to country music in their dorm rooms. Forte said she never knew what to expect when she got a vague text from Megan.
One of those texts came in the beginning of August, and when Forte walked in, Megan told her it was time to pick out her Halloween outfit, three months in advance.
“Megan, it’s like August,” Forte said. But that was Megan. She was a planner when it came to an event — especially one that might require a new pair of shoes.
Listening to country music in their rooms turned into going to country concerts. Forte worried her bag wouldn’t make it through security, and Megan said to throw it on the back of the wheelchair. “Everything always gets through if it’s on a wheelchair,” Megan said. They laughed.
She was the friend Forte could text last minute to go to an event across campus, and without hesitation, Megan would be by her side.
“She’s just such an incredible, motivating and inspiring person,” Forte said.
At graduation this spring, her nurse manager, Kc Buder, said Megan’s biggest accomplishment in college was the lifelong friends she made. She also graduated with a standing offer to work for the Make-A-Wish Foundation, where she had interned for three summers.
She could have stopped there: lifelong friends and a job after graduation, but Megan had something else in mind.
“Are you sure?” Buder asked her. Even the interviewers challenged her.
Megan was sure.
North Carolina was where she wanted to be for obvious reasons. She wanted warmer weather, and she has family nearby. But it’s more than that.
Megan is ready to start living as an independent adult. This means making decisions on her own. It means choosing where she wants to go. It means pushing herself outside of what’s comfortable — outside of the bubble she’s always lived in.
And she wants others to see that she can do it, to take her seriously. This means getting her master’s degree at UNC, so she can help other people with rare diseases.
“She wants to do what everyone else can do, and sometimes it’s impossible, and sometimes it’s just trying to find your way to make it work,” Buder said.
They’re making North Carolina work, just like Megan said they would.
She takes notes with pen and paper during class, and has a notetaker to fill in the holes. When she gives a presentation or answers a question in class, her nurse translates. She has tutors that come to her apartment most afternoons.
It hasn't been easy. On top of the stress of getting a master’s degree, being on another clinical drug trial and starting over in a new town, she’s also adjusting to new nurses.
She’s used to her “very organized chaos,” but outsiders aren’t. People see Megan’s life as an inspiration.
Like when she dedicated her 16th birthday party to raising thousands of dollars for another 16-year-old’s wish. Or when she spoke to President Donald Trump about rare diseases. She went forward with a dangerous spine surgery so that she could sit up straight in her wheelchair. She’s advocated for shorter clinical trials at the U.S. Food and Drug Administration. There’s a book about her family and a movie, too.
She’s every bit of that inspiration that people see, but she’s not done. Megan wants more.
Wanting more this time will come with greater challenges. Megan’s aware of the privileged life she’s had, of the team of people she’s had cheering her on. She’s always been the one being taken care of, but now it’s her turn to take care of other people.
“Tell me I can’t do it, and I will,” Megan says.
It’s like her freshman year at Notre Dame when she told Buder she wanted to go ice skating.
“And I’m like, 'OK', and then I think about it, and I’m like, 'That sounds like a terrible idea, but let’s try,'” Buder said. “That’s pretty much, yeah, that’s being friends with Megan.”
So, Buder pushed Megan out on the rink and spun her around. Megan flew across the ice in her wheelchair.
The look of utter fear and happiness sprawled across her face.
This article was originally published as a part of the UNC Media Hub program in the School of Media and Journalism and has been republished by The Daily Tar Heel.
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