Mom Next Door: Michele Erwin / Accessible Travel Advocate & Founder of All Wheels Up

WORDS
Nicole Jordan
PHOTOGRAPHY
Carter Rose
PUBLISHED
May 2018 in
DFWThrive
UPDATED
April 16, 2018
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Michele Erwin is changing the world—one crash test at a time.

In 2011, the Frisco mom of two launched All Wheels Up
after a difficult travel experience with her son, Greyson, who has spinal muscular atrophy (SMA) and uses a wheelchair.

The only organization in the world crash-testing
wheelchairs and wheelchair tie-downs for commercial flights, All Wheels Up is on a mission to put a wheelchair
spot on every plane, which would allow passengers like Greyson to fly in the comfort of their own chairs.

It’s no small feat, but Erwin’s already proven she’s up for
the challenge. Recognized as the authority on accessible air travel, Erwin is frequently called on by major airlines and universities to share her expertise. She regularly travels to Washington, D.C., to raise awareness and lobby for funding, and the U.S. House Committee on Transportation has called her organization “the leader in research.”

“It’s exciting to see that so many people are interested,” says the 43-year-old mom of two: Greyson, 11, and Vivian, 8. “There are 4 million Americans who use wheelchairs and 20 million globally, so our work will certainly make an impact on the world.”

A native New Yorker with a degree from the Fashion Institute of Technology, Erwin never dreamed she’d one day have airlines knocking on her door.

Before meeting her husband of 13 years, Douglas, and having Greyson, she worked in fashion merchandising
for heavyweights such as Ralph Lauren and Calvin Klein. After hiatuses following Greyson’s birth and the family’s 2014 move to North Texas (Douglas, who also works in the fashion industry, received a job opportunity), she’s hitting her stride once again as sourcing manager at JCPenney.

“Leaving for so long to care for Greyson definitely took a toll on my career,” she says. “Parents who take time off from their careers have the same uphill road. I don’t think
my story is special; it was just a forced choice.”

It was one of many difficult choices Erwin has faced since becoming a parent 11 years ago. When Greyson was diagnosed with SMA at 6 months, life as she knew it ceased to exist.

Intuition told her something was wrong right away. Milestones came and went unmet. But when she expressed her concerns to doctors, they blamed her—even
going as far as to accuse her of neglect.

“They made me feel like I was making things up,” says Erwin. “I was this parent that could never do enough.”

Finally, a friend got her an appointment with a pediatric neurologist, who immediately diagnosed the infant with SMA.

Erwin remembers the moment vividly. White noise filled her ears; she describes it like something out of a movie.

“This doctor tells you that your child has a terminal illness, and you’re in a state of disbelief. You don’t know what to do, where to turn … whether to cry. It was probably the most difficult day of my life.”

Refusing to wallow in the news, the Erwins sprung into action, setting up doctors’ appointments, locating support groups and reading about SMA on the internet.

What they learned: Similar to amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), SMA is a progressive disorder that affects nerve cells located in the spinal cord, resulting in immobilization. Even more disheartening: Children born with the disorder have a life expectancy of less than two years.

But, though Greyson’s care is complicated—around-the-clock nurses, nighttime assistance from a BiPAP breathing machine, a team of aides to help him through the school day and more—he has more than defied the odds.

And in her own way, so has Erwin. She’s faced situations
unfathomable to most parents, and while she’s the first to admit that she’s susceptible to bad days like anyone else,
she’s weathered the storm with grace.

“I wouldn’t want anybody to go through this,” she says. “It’s life changing, but it has certainly changed me for the better.”

Before Greyson was born, the Erwins adopted the mantra, “Here’s to our side of the grass,” a phrase that’s grown to hold great meaning over the years.

They practice gratitude for every day their feet hit the floor and consciously strive to prioritize “quality over quantity” in the way they live.

For Erwin, this means long days with little sleep as she balances a full-time job with family, running a nonprofit, and a little bit of self-care.

In between work and late-night grant-writing sessions, Erwin plays competitive tennis. It’s a passion she shares with Vivian, who also plays, and is typically the activity of
choice during their weekly mother-daughter date nights.

The mom is careful to ensure that Vivian isn’t overshadowed by her brother’s extensive needs and gets the undivided attention she craves as a typical 8-year-old.

“She’s not shy and lets me know when I’m not giving her the attention she needs,” she says. “But she understands the needs of her brother.”

Erwin says it was a hard decision to have another child—because SMA is genetic, they had to consider the possibility that their second would have the disorder too. But ultimately, their desire for the “family dynamic” they’d dreamed of won out.

And today, with the exception of medical equipment and nurses migrating in and out, they have just that. The kids go to school, mom and dad have date nights and the family spends time together hanging out in front of the TV.

Given Erwin’s determination and All Wheels Up’s success thus far, family vacations are sure to be on the calendar soon, too.

“When I was younger, I’d look at my grandmother or Jackie Onassis—very strong women with authority and gumption—and I’d think about how I’d love to be like that one day,” says Erwin. “With my child’s illness and the path I’ve taken trying to advocate for him and others around the world, I realized it just takes finding that passion and believing in yourself. I’m proud of me today.”

To donate or learn more about All Wheels Up, visit allwheelsup.org

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