Turning Grief into Positive Action: The Pohl Children's Scholarship Foundation by Becky Flansburg

     The chances of someone having heard of Spinocerebellar ataxia 7 (SCA7) is unlikely. Having family loss and heartache connected with this rare hereditary disease is even less common. Having to help not one child, but three, navigate this fatal disease is unimaginable, yet that is precisely what Suz and Kyle Pohl of North Central Minnesota have endured. 

     Spinocerebellar ataxia 7 (SCA7) is an inherited disease of the central nervous system that leads to impairment of specific nerve fibers carrying messages to and from the brain, resulting in degeneration of the cerebellum (the coordination center of the brain). SCA7 differs from most other SCA forms in that visual problems, rather than poor coordination, are generally the earliest signs of the disease.

     "My unofficial description is this," Suz Pohl shared. "SCA7 is a rare and genetic neuromuscular disease that kills the brain's cerebellum portion first, the muscle center, causing all motor functions to be slowly lost. It also causes blindness. Near the end, the front portion of the brain that controls logic and thinking also dies."

     There is no cure for SCA7, and medical professionals have identified four main types of the disease: infantile, childhood, teen, and adult. The Pohl family has experienced all four. Mearan was the first to die from SCA7 in 2002 at the age of two. Bracken was almost eight when he passed, and Kegan was twenty-five when he succumbed to the neuromuscular disease. Husband and father, Kyle also has the disease and is considered “terminal”. The couple's oldest son, Gavin, does not have SCA7.

   Though their grief is deep and profound, the Pohl's discovered long ago that being of service to others in need is an integral part of their healing process. Though SCA7 itself is rare, grief and loss are a world-wide issue.

     "With Mearan, we had no idea what she had," Suz recalled. "By the time she was two, she had been tested for literally hundreds of things, including SCA7, but there still were no answers. It was not until after she passed that an autopsy revealed that she did, indeed, have the disease. Since then, the test has been revised so no more children with the disease would die from an "undiagnosed neuromuscular disorder."

     "After Mearan passed, I made a promise to her to educate people about SCA7 and to offer support to other families whose children have similar issues", Suz added. "It was a lonely and scary place for all of us, and there was nowhere to turn for help or support. That is something I never want any parent to have to endure ever again."

     With a strong desire to be of service to other grieving families, Suz created The Pohl Children Foundation in 2020 as a non-profit initiative in loving memory of Kegan, Bracken, and Mearan. Along with support for grieving families and individuals, The Pohl Children's Scholarship Foundation plans to offer scholarships to children with similar interests and organizations that provided services to the Pohl children during their lives.

    "No parent wants the life experience of having to bury multiple children," Suz said. "But we know many people are struggling with the unfamiliar situation of burying a loved one. Children are just as vulnerable as adults when it comes to grief, yet they process it differently and often don't fully understand what is happening."

     Suz shared that their Foundation is actively working on helping kids grieve on a local and national level. This support and outreach includes offering a "forever bear" to children who have lost loved ones, creating Healing Kits, providing meal vouchers or gift cards to restaurants to parents/ families whose children are in the hospital, and offering scholarships.

     Suz shared, "We will also continue to provide yearly grants to Mounted Eagles, Lighthouse for the Blind for Juveniles, Paul Bunyan Co-op, Community Ed for the STEM program, Brainerd Parks & Rec, and so many more local services. All of these wonderful organizations were instrumental in helping our family navigate this disease, and we are committed to giving back to them." 

     Pohl shared that the scope and focus of the Foundation continues to evolve every month. As their businesses and non-profit continue to shift and change, Suz shares that her 31-year marriage to husband, Kyle, does as well.

     "I think Kyle and I are rare because we, as a couple, have become stronger together despite our profound losses. It is incredibly difficult for couples to survive the intense pressure and pain associated with losing a child. However, Kyle and I learned long ago to lean on God and each other, know our priorities, and make sure we have healthy communication. I believe that these things are the reasons for our longevity as a couple."

     Suz added that she also thrives on being busy. In addition to their flourishing businesses, Cygneture Title Solutions, LLC, and Ultimate Courtesy Services, the couple recently built a new home to accommodate Kyle's growing medical needs.

     "As a daughter, sister, wife, mother, and businesswoman, I know I am evolving too. I am learning to slow down and savor the special moments. I am learning how to 'be still' and just let the path for our non-profit unfold. Kyle and I, and our son Gavin, count on each other for comfort and clarity daily, which is one of the pieces of wisdom and support we hope to share with other families."

     To learn how you can offer financial support or nominate a family in need, visit the Pohl Children's Scholarship Foundation on the web at PohlChildrensFoundation.org.