This is part of the series Shore Stories: Life Along the Lakeshore, columns by local and former residents about their lives.
This year, we introduced the Brave Like Breanna Scholarship, a heartfelt tribute to my sister Breanna's extraordinary courage and a recognition of the obstacles individuals conquer in their personal journeys. This scholarship offers Plainwell High School's graduating seniors the chance to share their own stories of triumph over adversity, whether it's a public battle or a private struggle. My nonprofit, Champions for HD, crafted the scholarship to commemorate Breanna's memory and true bravery.
Since its inception, Champions for HD has aided more than 80 families and raised upwards of $100,000.
I graduated from Plainwell High School back in 2015, and all my siblings have attended Plainwell as well. This year would have marked Breanna's senior year, but we lost her four years ago to a rare condition called Juvenile Huntington's Disease. It was a couple of years before Bre's diagnosis that we discovered Huntington's Disease ran in our family. At that time, I had no idea about this ailment or its implications. Looking back, it's difficult to recall a time when Huntington's Disease didn't cast its shadow over our lives.
Shelby Lentz, right, established the Champions for HD foundation and a scholarship in honor of her sister, Breanna, left, who died from juvenile Huntington's disease..
Huntington's Disease is a genetic disorder that gradually ravages the brain, impairing cognitive and motor functions. Children of an affected parent stand a 50% chance of inheriting the genetic condition. Following positive tests for Breanna and our father, I decided to learn about my own diagnosis, which unfortunately turned out to be positive as well. We still have two siblings yet to undergo testing, both at risk of inheriting it from our father. Typically, symptoms of Huntington's Disease don't manifest until mid-life. However, Breanna was diagnosed with an even rarer form known as Juvenile HD, which affects children, leading to rapid decline. I received my diagnosis during my sophomore year in college, studying music in Nashville, Tennessee, prompting my decision to return home to be closer to my family.
In 2018, Shelby Lentz, left, established a nonprofit named Champions for HD, aimed at supporting families like hers in need of hope and assistance.
In 2018, I established a nonprofit named Champions for HD, aimed at supporting families like ours in need of hope and assistance. The process of receiving disability support for Huntington's patients takes an average of two years, leaving families in limbo. Additionally, we extend financial aid to local research initiatives for Huntington's Disease. The name Champions for HD draws inspiration from a song I co-wrote in Nashville titled
Champion, influenced by the Rocky Balboa movies. It seemed a fitting name for the organization. Since its inception, we've aided over 80 families and raised upwards of $100,000. Following Breanna's passing, I authored a children's book in her honor titled
Brave Breanna. The title encapsulates her spirit, as she exemplified unmatched bravery despite her physical decline. She faced each day with a smile, cherishing life and her connections with others. Though she was unable to continue attending school due to her condition, she cherished her time there and the bonds she formed. In her brief time with us, she left behind a legacy of love, empathy, and inspiration.
Juvenile Huntington's Disease is a particularly rare and aggressive form of the disease that progressively robs a person of cognitive and motor functions.
To honor Breanna's memory, I devised the "Brave Like Breanna" scholarship for the Plainwell High School class of 2024. This $500 scholarship offers her peers the opportunity to share their own tales of overcoming adversity and showcasing bravery akin to Breanna's. I'm immensely grateful that her essence continues to influence her classmates, allowing us to commemorate her enduring inspiration.
The scholarship winner will be announced May 23 at the Plainwell High School scholarship awards ceremony.
Shelby Lentz is a singer and performer. After the diagnosis of Huntington’s Disease in her family, and being diagnosed herself, Shelby began her own nonprofit, Champions for HD to help aid research as well as other local families struggling with this disease. This was named in honor of her song “Champion” that is inspired by the Rocky movies.
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