RED OAK, TX — The word “disability” doesn’t exist to Emily Baudin. A conversation with her likely means you’ll be smiling until your cheeks are sore. And you can’t help it because her happiness is infectious.
However, while running track as a freshman in high school, her coach noticed something was off about how Emily was walking and pointed it out to her. Emily found out at the age of 15 that she had Friedreich’s Ataxia, “a debilitating, life-shortening, degenerative neuro-muscular disorder,” according to the Friedreich’s Ataxia Research Alliance, or FARA. Ever since, her life has been a bit different.
“I had a normal childhood,” she said. “I’m super blessed and super thankful that I had a normal childhood where I ran, and I walked and I played normal, I guess you could say normal, childhood stuff.”
The gene for FA is recessive, so both parents have to carry the gene for a child to develop the disorder. About one in 50,000 people in America have FA.
For three years now, Emily has been using a wheelchair. Because FA affects the use of muscles, she will never be able to walk again and must use the wheelchair to get around.
“That was a very devastating reality point because once you rely and become dependent on a device like that your independence, as far as what most people think, become less, so now you’re totally dependent,” said Alexis Penn, Emily’s mother and a Blue Cross and Blue Shield of Texas health and well-being consultant. “But it works two ways.”
Penn, 58, says that though Emily is wheelchair bound and though her life will never be the same, this is a fact of her life and there is still so much life to live. Penn says they took an afternoon to make the transition to the wheelchair together as a family and, through tears, found the chair to be a blessing all its own.
Penn said that Emily’s wheelchair offers her a way to be able to do things on her own, instead of relying on other devices or people to help her as much.
“The freedom that the chair gives her is much more beneficial than the loss of walking. The chair to us looks like a crutch, but the chair to her is independence,” Penn said. “Emily is the epitome of living life to the fullest.”
And she plans to continue living life that way in the years to come.
Emily met Tye Baudin via ChristianMingle, an online dating website for Christians, at Zera Coffee Company when she was attending the University of North Texas in 2014 as a double-major in English and public relations. They were married in December 2015.
“She had all of the information about the condition on her profile and I took it upon myself to educate myself on what all of that was. It didn’t scare me or anything like that,” Tye said. Over time I feel like God has just graced me with the ability to recognize when she needs help and when she doesn’t. And I’m still learning, I don’t have it down-pat. It’s still a learning process.”
Well adjusted to their lives now, Emily is about seven months pregnant. She and Tye, a firefighter in DeSoto, are expecting their first boy named Logan.
The only way to know if a child will develop FA is for both parents to be tested for a certain recessive gene which is specific to FA. After testing, the couple found out that Tye did not have the gene. Their child will not develop FA.
And so, though bound to a wheelchair, Emily still has high hopes for her life and the life of her family. She has become an advocate for her story and the story of FA she shares with thousands of others across the country.
Though her condition may limit some of her abilities or what she wants to do, she does not let that get in the way of doing good for her and others.
When she was younger, just diagnosed with FA, she took part in clinical research trials at the University of California, Los Angeles and at the Children’s Hospital of Philadelphia to help clinicians study her and the disorder. As she got older, she met advocates with FA through FARA and spread out into a community of people just like her. Now, she embodies what it means to live in spite of limitations and FA.
Emily and Tye ride together annually in Ride Ataxia races, which are events put on across the country by Ride Ataxia, a non-profit group that’s a part of FARA which raises money for FA research and awareness. Ride Ataxia inspires thousands of people, with and without FA, to get on their bicycles and tricycles and race for miles in the pursuit of a better life for those affected by the condition.
Their most recent events were held earlier this April at UNT’s Apogee stadium with six 25 and 50-mile races happening throughout the day. Emily and Tye rode in tandem, with him on a tricycle and her in-tow behind, in the six-mile race. She said she normally rides the tricycle herself, but couldn’t this year because she might have gone into labor mid-race.
“In this condition of Friedreich’s Ataxia, if you’re not in connection with other people that have the same condition it can be very lonely because you don’t have someone who can empathize with you,” Tye said.
He and Emily said they were happy to have met other couples and families through Ride Ataxia.
“When you have someone like that,” he said, “It just takes so much weight off your shoulders and it’s extremely beneficial and helpful to the person that has the condition.”
As a child, Emily played soccer, ran track, swam, was a cheerleader and came from an energetic family that loves the outdoors, even shot a buck before her older brother. With that spirit still inside her, she stays active, always moving. With their child coming in the next few months, her life and the lives of her new family are all moving pretty quickly.
“I just want to be a great disciple of Jesus and a great wife, mother and granddaughter,” Emily said. ““For someone else who was recently diagnosed with FA, I would just tell them to stay positive.”
Featured Image: Former UNT student Emily Baudin was diagnosed with Friedreich’s Ataxia at age 15 while still in high school. Though wheelchair-bound for the rest of her life, she stays active as an advocate for her condition, spreading awareness about FA. Kyle Martin