KALAMAZOO, Mich — Shelby Lentz is fighting back against Huntington's disease (HD) in any way she can. The degenerative brain disorder has affected her grandfather, father; and her younger sister, who passed away from Juvenile Huntington's last year.
"With Huntington's, it's already a rare disease, only one in 10,000 people has it," Lentz told FOX 17. "And then Juvenile Huntington's is only 10% of those people who have Huntington's. So we are introduced to a rare disease in our family, and then somehow my sister gets an even rarer form."
“Watching her decline was the hardest thing I've ever seen. Because a year after her diagnosis, by the time she was 12, she had a feeding tube. She was in the hospital more often than she was home.”
Lentz learned at age 21 that she also carries the gene for Huntington's and will develop the disease at some point in her life.
In January 2019, Lentz was featured as a Pay it Forward Person of the Month for starting her non-profit Champions for HD, which raises money and awareness, with the hopes of one day finding a cure for Huntington's disease.
Nearly a year after losing her sister, Lentz decided to channel her grief to "champion" the cause in a new way.
She created a children's book, now available on Amazon, written in honor of her sister called "Brave Breanna: How One Girl Smiled Her Way Through Juvenile Huntington's Disease."
"A light bulb went off in my head and I said how beautiful would it be to not only educate people on what Juvenile Huntington's is, but to do it through Breanna's eyes and her perspective," explained Lentz. "I really wanted to try and just show exactly who she was through this book, because she impacted so many lives in the short time that she was here. And everyone who knew her knew that no matter what was going on, Breanna always had a smile on her face."
Lentz added the book's message is one everyone can learn from.
"It would be a hope and just finding a light at the end of the tunnel," she said. "Because not everyone has Huntington's disease. Not everyone has Juvenile Huntington's disease, but everyone has adversity in their life."
Lentz believes her sister would be proud of her work.
"She lost her ability to talk. She would just gesture, she didn't know sign language. We had our own communication. So she would always do a thumbs up and thumbs down to tell us that she was really digging it or she was not happy," Lentz explained. "And someone commented after I posted this and said, 'I bet you she's giving you a big thumbs up from heaven right now'. And I couldn't have thought of a more perfect comment than that."
Lentz hopes to donate copies of the book to area schools and libraries.
To learn more, or purchase Brave Breanna, click here.
To learn more about Champions for HD, visit the non-profit's Facebook page or website.