The Elgin Courier: September 26, 2018
Despite a diagnosis of spinal muscular atrophy that caused doctors to not expect her to live past the age of two, Dana Carpenter, now 41, has always been an active person. When she got her first electric wheelchair she could control on her own when she was seven, she took off with her twin sister on her bicycle and explored for hours.
“Ever since then, I just wanted to go, I wanted to experience everything I can,” she said. “Traveling is the best way to do that for me. You can see so many different people and different things and experiences in life.”
Carpenter was born and grew up in Taylor but now lives in Austin. She has always had a passion for travel and adventure, but she is now currently stuck at home, unable to leave now that her most recent vehicle continuously breaks down.
Right now, Carpenter has a GoFundMe to raise money for a new van because her current van is constantly breaking down. She worked from home up until a couple of months ago when her job was moved back into the office. While she was willing to come into the office to work, she wasn’t able to because of a lack of reliable transportation and she lost her job. In addition, she needs reliable transportation in order to take advantage of a new treatment for spinal muscular atrophy (SMA).
SMA is a progressive disease, meaning its symptoms get worse as time goes on. However, a new treatment called Spinraza was approved in December 2016 and is able to stop the progression of SMA. Carpenter is eager to try this treatment; however, there are no places in Austin treating adults with the treatment, so she would have to travel to either Houston or San Antonio. Without her own van, this is impossible.
Before her current van, Carpenter had a van that lasted her for years. With that van, she traveled all over the country with friends and family, from California to New York to Disneyland.
However, now Carpenter can’t travel without a van, and she can’t leave her apartment except for medical appointments. She has been at home for about a year.
“It’s really life-changing, not having (a van),” she said. “I’m sitting here going crazy now, not being able to get out and do all fun things I used to do.”
Currently, she just tries to keep herself busy by writing; she is writing a story right now to submit to a writing contest.
“It’s getting pretty boring,” she said. “It’s kind of hard to write about adventures when you’re not having adventures.”
One such adventure she has written about was published in Chicken Soup for the Soul: Step Outside Your Comfort Zone about the time she went skydiving in college. One of her neighbors was in the Air Force, and he took Carpenter skydiving.
“I always wanted to do it,” she said. “It’s the thought of life floating and being weightless. I’ve always been fascinated with it.”
Carpenter said it was an amazing experience that changed her perspective on life.
“Having a disability, you run into things all the time you can’t do and people think you can’t do,” she said. “I was graduating college around that time and just you know, felt like the world was my oyster. I thought that was a pretty big statement, to jump out of an airplane when you can’t even walk. It made me realize that I can accomplish anything I put my mind to.”
According to Carpenter’s mother, Mary Neighbors, Carpenter has always wanted to do things for herself.
“She’s always wanted to work and earn her way in this world,” Neighbors said. “She has a great work ethic. She would go out of her way to help anyone.”
Once she gets a new van, Carpenter plans to visit her grandmother, who recently moved into a nursing home in Elgin.
“And then, I’m itching for a road trip,” she said. “I want to get out of the apartment and people-watch and experience all those fun interactions with people. I’m going to do the big things, like travel, and do the small things, like go to the grocery store.
As of Sept. 23, Carpenter’s GoFundMe is at $3,825. Her goal is $7,500, which will pay for the van itself. After she buys a van, her insurance will cover the modifications necessary to make it wheelchair-accessible.
“A lot of my friends are donating,” she said. “I had a couple of friends donate $1,000 each. It’s amazing to me, the awesome people I have in my life.”
In the past, Carpenter has worked as an activist, volunteering for organizations that help people with disabilities. She said there is a huge gap in services to assist people with disabilities in the area of transportation.
“When people think of people with disabilities, they think they’re being provided for, and for the most part that’s true … but there aren’t a lot of places that help with transportation,” she said. “I wish more people would see that as a need and try to come up with some kind of solution that would help people like me.”