By Dennis Biviano
HILLIARD, Ohio — As Hilliard native Katy Simon walks alongside her daughter Sophie and mother-in-law, Paula Lintz, they reflect on this beautiful fall day and forget for just a short time the tough journey that lies ahead.
For nearly two decades, Simon has battled Huntington's Disease, an inherited condition that causes nerve cells to break down in the brain over time.
And in her case, the disease with no cure, which also took the life of her mother, continues to progress.
“I have a feeding tube that I got placed to help me swallow, to help me get the nutrients I need,” said Simon.
“It's heartbreaking for me, and in the last few months, I've seen more deterioration, which is really very devastating,” said Lintz.
Simon said her children are not showing signs of HD.
Huntington's Disease affects more than 40,000 people in the U.S., and another 200,000 are at risk of inheriting it. The disease usually strikes adults between the ages of 30 to 50.
Despite these odds, both Simon and Lintz continue to give back, leading the Central Ohio Chapter of the Huntington's Disease Society of America Team Hope Walk.
Their goal this weekend is to welcome 100 people in and around Columbus affected by the disease and raise $11,000 for research.
“It's surreal. I love seeing all the families that come. It's just hope, you know, because not a lot of people have it these days. And it helps out a lot,” said Simon.
Lintz said she's also keeping an eye out on the Huntington's Disease Parity Act that is making its way through Congress.
The act would wave the two-year Medicare waiting period as well as the five-month benefit waiting period for those with Huntington's Disease.