OAK CREEK, Wis.—An Oak Creek family seeks to raise awareness about Huntington’s disease.
Huntington’s disease is a rare disease with 41,000 symptomatic Americans and more than 200,000 at risk of inheriting the disease.
For a year and a half now, Chris Guzikowski has been living with this disease. The neurological disorder affects him in multiple ways, including his conduct.
“The involuntary hand movement that I can’t control, so sometimes when I’m driving or working all day, it moves on me,” Guzikowski said.
He is delighted to return home because his whole family will be there.
Guzikowski said he cherished those moments because he knew his condition was going to get worse. Huntington’s disease is described as a combination of ALS, Parkinson’s disease and Alzheimer’s disease all occurring at the same time.
“I feel like I have more mumbling speech than clean, clear speech, so it’s starting to change slowly,” Guzikowski said.
Guzikowski remembers being heartbroken when he was diagnosed with the same disease that killed his older sister ten years ago.
Knowing that Huntington’s disease is hereditary and can be passed on to his three daughters, he wanted to be proactive.
“We thought we should raise awareness in the Oak Creek area, so last year we held a race and so we had our first Guzi’s 5K,” Guzikowski said.
His daughter, Carly Renner, is a nurse. Sometimes she helps her father with dexterity exercises to check his motor skills.
” It was very difficult. My dad and I are very close, and so for him it’s really hard to watch, but I think the hardest part is knowing even if he can explain it to all of us. It’s still very isolating for him and that makes me really sad,” Renner said.
Guzikowski wants to raise awareness for the disease and support the search for a cure with the 2nd Annual Guzi’s Hunt for the Cure Run/Walk for Huntington’s Disease.
This year, the event aims to raise $100,000 for the Wisconsin Chapter of the Huntington’s Disease Society.
While Guzikowski hopes to make a difference in raising awareness of the disease in the community, he said he appreciates his wife for being there for him every day.
“Whether it’s folding laundry or making sure my lunch is ready. She does a lot of extra stuff on the side, so I couldn’t be more grateful to her for that,” Guzikowski said.
Although his condition could ultimately lead to his death, Guzikowski does not despair of one day finding a cure.
A remedy that he hopes will not only help him, but that will help so many others fighting the same fight.
Guzi’s Cure Hunt The walk will take place on May 22 at 8:00 a.m. in Lake Vista Park in Oak Creek.