"As supportive as family can be in these situations, they don t know what it's like," Adrianne Haslet-Davis tells PEOPLE

By Tiare Dunlap
Updated June 05, 2015 06:20 PM
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Nicole O'Neil Photography

Before losing part of her leg in the Boston Marathon bombing, Adrianne Haslet-Davis knew nothing about the thousands of American amputees unable to afford or access prosthetics – now she has dedicated her life to fighting for them.

“I remember searching the web late at night in the hospital [after the amputation], and one of the blogs that I came across was titled, ‘I Used to Be a Dancer and Now I’m an Amputee,’ ” Davis tells PEOPLE. “I thought, ‘Oh, that’s so sad for that person,’ and then I immediately realized, that’s me.”

Davis, a ballroom dancer, says she discovered that the blogger could not afford a prosthetic leg and was confined to a wheelchair.

“When I became an amputee, all I was thinking was, ‘How soon do I get my leg?’ I never thought, ‘Oh, I may not get a leg,’ ” Davis says.

She soon realized that it’s a reality faced by many amputees. A prosthetic device can range in price from a few thousand to well over $50,000, says Dan Ignaszewski, director of government relations at the Amputee Coalition of America.

Many insurance companies restrict coverage to a maximum of $2,500 or $5,000 per year for prosthetic devices, leaving amputees to pay thousands more out of pocket.

“We’ve had stories of people who have had to raid their retirement funds or raid their child’s college savings just to be able to afford a device to be able to get back to work,” Ignaszewski tells PEOPLE.

In addition to the financial toll, limited access to prosthetics comes with a heavy emotional cost.

“I’ve gotten to the point where I feel like I’m more disabled by my insurance company than I am by the fact that I’m missing my foot,” Peggy Chenoweth, an amputee advocate tells PEOPLE.

Until May of this year, New York State restricted amputees to one prosthetic per limb per lifetime. Davis traveled with the Amputee Coalition, the American Orthotic and Prosthetic Association and Mobility Saves to testify before Congress. As a result of their coordinated effort, New York’s one-limb restriction was eliminated.

As Ignaszewski explains, prosthetic limbs need to be replaced every three to five years due to wear and tear. In addition to the need to replace prosthetics, amputees need specialized prosthetics for different activities, like running or going in water.

“I have to beg and grovel to get a device so I can go in the pool with my son,” Chenoweth tells PEOPLE. “I want to live a very active lifestyle, and I want to be the best mom that I can be and I’m being held back.”

Since Davis doesn’t have a waterproof prosthetic leg, she hasn t been able to stand in the shower for two years – nor has she been able to run.

“I’d love to be able to run, but a running leg is considered a luxury,” Davis says. “I could run if something scared me, but it would hurt a lot, and I would do a lot of damage to my leg.”

While Davis doesn’t have access to the prosthetic she needs for these activities, she’s more concerned with others who don’t have access to prosthetics of any kind. “I never lost sight of those patients,” she says.

She plans to start a national organization called Sister Legs that will pair female sudden traumatic amputees with other women who have faced the same struggle.

“I want to make sure they have someone they can call in the middle of the night,” Davis tells PEOPLE. “Because as supportive as family can be in these situations, they don t know what it’s like.”

Davis plans to continue to interview seasoned amputees for her organization as she visits Boston-area hospitals and works with as many patients as she can.

“It feels amazing to be there,” she says. “I cry endless tears with them, sometimes I’m first to cry, sometimes I’m already crying before I hit the room.”

Hearing their stories inspires her to share her own story and advocate on their behalf.

“The more people that are aware, the more we talk about it, the bigger changes we’re going to face. I’m very optimistic,” she says.

David adds: “I hope that people who are sitting on their couch and can’t afford a leg will see this and say, ‘Wow, I might get a leg in my lifetime.’ That’s pretty cool.”