NBC KSDK News interviews Mandi about her HD Journey
By Art Holiday
ST. LOUIS — For decades, Huntington's disease has affected Mandi's family. First it was her grandmother.
"Not a time that I can remember in my life that hasn't been affected by Huntington's. My grandma Dorothy had it. So even as long as I can remember, being a child, you know, she had it even back then," Mandi said about her deceased grandmother. "Then my dad ended up getting it also."
Huntington's disease is a genetic disorder affecting the central nervous system. It often leads to involuntary movements, memory loss, and difficulty talking. The disease is sometimes described as a combination of ALS, Parkinson's disease, and Alzheimer's.
"It tears families apart. I mean, it can be a lot of chaos," said Mandi. "It's just a very devastating disease to just see a person you know deteriorate like that."
There is a 50-50 chance that every child of a parent with Huntington's will inherit the disease. Mandi has developed a philosophical approach to the unknown.
"The concern is real, but I think I have, like, an urgency to live. So I feel like if I have it or if I don't, it doesn't really matter to me because I'm going to live my life regardless," said Mandi.
She savors the remaining time she has with her father, whose condition continues to deteriorate because of Huntington's symptoms.
"I still love him with my whole heart, you know, as much as I always have. But he's not the same person. You know, the disease robs you of your entire person, so it's been hard," said Mandi. "I've always been a daddy's girl and very lucky to have him. Our relationship has always been very close."
Mandi will attend Saturday's Team Hope Walk, a 10 a.m. fundraiser at Tilles Park. She said she's found a support system from other families affected by Huntington's.
"It's great to be able to meet people that understand what you're saying and they don't look at you like you have four heads, you know, they just get it without explanation," said Mandi.
"This is why I share my story. I know it's uncomfortable for me to share, but I know it would help somebody who needs help."