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Fighting for a cure: ALS brings moms across the country together

(KY3)
Published: Nov. 27, 2018 at 10:13 PM CST
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ALS is a disease that destroys nerve cells, the brain and spinal cord. Unfortunately, there is no cure. Typically, it affects people in their 50's and 60's. But for one Springfield family that was not the case.

"I have been diagnosed with ALS, known as Lou Gehrig's disease," Haley Stevens said in an interview with the Springfield Little Theatre years ago.

Stevens was just a sophomore at Central High School. In the fall of 2007, she noticed she had some trouble rehearsing routine dance moves.

"I'm on the dance team, and we were doing a dance and we had to throw our arms up," Stevens said. "I couldn't lift my right arm all the way. We would do rolls on the ground and I couldn't get up and it just started going downhill from there."

ALS overtook Stevens' body, she died in Sept. 2009.

Gretchen Teague, mom, was on a mission. Recently, she was connected with more than five other women who have also lost a young daughter to ALS.

"When I first joined the group I thought, it'd be me supporting them since it had been so long since I had been in their shoes," Teague said. "But I've found that they have really supported me in a lot of ways too."

The other mothers are all across the country. Lori Hermstad lives in Iowa. She lost her daughter, Alex, in Feb. 2011. Amy Steffen lives in Minn. She lost her daughter, Hayley, in Mar. 2018. Belinda Lambert lives in N.C. She lost her daughter, Hanna, in Oct. 2017. Bethany Bland lives in Ohio. She lost her daughter, Sierra, in Dec. 2016. Judy Baird lives in Utah. She lost her daughter, Whitney, in Aug. 2008.

"We stay in touch, we are all the time shooting each other some crazy little thing," Lambert said.

"I don't know how I would be making it through without these other women," Steffen said.

Perhaps a mother's bond is the grief that ties these women together. Through their loss, they gain perseverance.

"The whole interaction with these other moms and seeing what their daughters went through, you can kind of look back on your own story and say, 'We did that, we went through that,'" Baird said.

"Nobody really understands how devastating ALS is I think until you've seen it first hand," Bland said. "Like you hear about it but I don't think you really fully understand it. So it just means a lot to have someone who gets it, has seen what we've seen and had to make some of the choices we had to make."

"We support one another," Hermstad said. "We've been down that same road, and we have a bond no one understands but us."

These moms are on a mission to bring awareness to ALS.

"Hopefully with more awareness would come an earlier diagnosis," Steffen said.

"We are proudly and valiantly crusading for awareness, research and honor," Hermstad said. "All for our fearless, beautiful, heroic children. And we just pray no other child or adult will have to endure the ravages from the suffering of ALS again."

The moms met face to face for the first time in May. In late Oct. they were able to meet again. The national organization, Project ALS, honored the families during their annual gala. To learn more, visit: www.projectals.org

"Our stories I think meant a lot to them that night," Baird said. "And it meant a lot for us as mothers to be able to share them again."

Many of the moms also walk to defeat ALS with the ALS Association. For more information visit: www.walktodefeatals.org

Teague says they are also connecting with other moms who have had children die from the disease. There is another family in Springfield, their teenage son died from ALS. To learn about his story,

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