Linda Wagner joins us to tell us about the Ataxia in her family. Read more about her story.
I am Linda Swier Wagner. My connection with Ataxia is that my first husband, Larry Swier, my daughter, Karlena Swier Cahalan, and my grandson, Kaleb Cahalan, have all been afflicted with SCA1 Ataxia.
Larry was one of several relatives that gathered at the Ataxia Clinic in Sioux Falls, SD where Dr. Larry Schut conducted testing. Larry and I were dating at this time, and I attended the clinic with him. Larry and I continued attending the Ataxia Clinics in Minneapolis for several years. Dr. Larry Schut was the doctor that told Larry of his Ataxia diagnosis. Larry passed away in 1999 at the age of 46.
At the age of 18, Karlena, my only child, was diagnosed through the discovery of the ataxia gene. She was the first person who was diagnosed with ataxia this way. Dr. Larry Schut was the doctor who told her of her diagnosis, and I was present on that devastating day. Karlena went for experimental testing for Ataxia several times to try and help find a cure for Ataxia. She didn’t believe the testing would help her, but she hoped it might help to find a cure for her children if she had any. She passed away in 2010 at the age of 35.
Kaleb, Karlena’s only child, was diagnosed with SCA1 Ataxia in 2020. He too was tested and told of his diagnosis by Dr Larry Schut, and I were present with them on that devastating day. Kaleb is the last living relative of the Swier-Schut family who was in line to carry the Ataxia gene. Kaleb is checking into being a patient for the Natural History Study in Gainesville, Florida.
Ataxia is a very hard disease to live with. We pray that researchers will soon be able to have the drug approved by the FDA so Kaleb will be given the drug so his disease may be slowed down or even cured. I have been involved with ataxia for the last 51 years, and I am very hopeful a cure is coming. Hopefully, all the hard work that was done by Dr. Larry Schut will become a reality in his lifetime!
Thanks for sharing your story Linda Wagner!
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