Quinn Anton Jensen was diagnosed with spinal muscular atrophy (SMA) type II on March 2007 in Iowa City. Quinn’s mom, Nancy, recalls the genetic testing process took over a month. It was a stressful and frightening time and the Anton Jensens wish the diagnosis process was faster. Nancy recalls feeling devasted as there was still no treatment for SMA at that time. The Anton Jensens were told to “go home and love him … He may not make it to his teen years.” Quinn is now 13 years old and is receiving treatment for SMA.
The Anton Jensens heard about Cure SMA through an Iowa chapter leader, Michelle Soyer. Michelle personally reached out to them and provided the Anton Jensens with support and encouragement. Soon after, they attended their first Annual SMA Conference where they met families affected by SMA. Parents gave them relevant, hopeful, and realistic advice. SMA families find so much comfort and support from connecting with others who share their experiences, and the conference is one of the most powerful examples of our community in action.
“That’s when it occurred to me that if not for Cure SMA, Quinn wouldn’t have had that experience of feeling like a normal kid,” Nancy recalls.
In June, the Anton Jensens attended the 2018 Annual SMA Conference in Dallas, TX. In addition to the conference’s fun activities, Quinn appreciated hearing from older teens and adults with SMA discuss topics like college, relationships, new tools, surgeries, and more. The “It’s a Wonderful Life” panel is extremely beneficial for all attendees, as the audience is encouraged to ask questions and hear directly from adults living with SMA about their experiences.
Like other 13-year-olds, Quinn is thinking about college and post-grad life. He is considering Illinois State University or another university that’s accessible. He enjoys thinking about how people think and behave, so he’s considering becoming a psychologist. He’s also thinking of becoming an entrepreneur or engineer.
When asked what advice he would give to others living with SMA, Quinn said: “Don’t be afraid to ask for help. You have to be open and adaptable to things. Don’t let things hold you back.”
Cure SMA provides resources and community support to those affected by SMA through our Annual SMA Conference, local chapters, and events. Our local SMA chapters provide a foundation and sense of community for families affected by SMA, whether sharing practical advice or simply having someone nearby who understands the complexities of the disease.
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