Darrin Henry and Kelly Black were Parkwood High School sweethearts. After getting married they headed out from Joplin to adventure the world. They didn't know a genetic disease called Huntington's, aka HD, would bring them back to Joplin where life is about close friends and family.
Huntington's or HD is a genetic disease that is passed through family lines. However most already have had children before the typical 40 year old onset. Kelly already had their two girls, Tiffany and Crystal, before HD started showing itself.
"Kelly was 33. It just started as a twitch in her finger. We've been on this journey with HD now 21 years" says Darrin as he holds her hand in the facility where Kelly has been for 4 years.
"When she got sick we thought old fat white men got HD. So there's so much to do in educating families and supporting them and helping each other face HD."
Darrin started TEAM HOPE WALK JOPLIN years ago, "I just didn't know what I could do. I knew I couldn't just sit by and wait. I had to do something." Now there are events in KC, St Louis, Columbia, Springfield and Joplin every year. "If we aren't moving forward and if we aren't taking that first step towards something - a cure or medicine to cope with symptoms, then we will never get there."
It's not really about the actual one mile walk. Even though Landreth Park will be set up like a race event. With a start/finish line, big speakers and fun music. It's symbolic to show we are in a race with HD - to find a cure before so many slip away.
Kelly will be there with her Parkwood High School sweetheart, Darrin. Her girls, Tiffany and Crystal, who are now mom's themselves. And a group of little kids who only know her as Nana.
It's really about HD families, the silent auction and a way to show our support to one another. Oh and the bounce house, Nana's kids love the bounce house.