Breaking the branch: How one woman plans to stop spread of disease by not having kids
'I will actually be the the person who stops Huntington's in our family,' says Chantelle Smith
Update | July 12, 2019: Since this story was first published on June 10, 2018, Chantelle Smith's mother passed away. Smith told Out in the Open that she still plans not to have children, and is happy being a stepmother. The original story runs below.
Chantelle Smith's mother didn't know she had Huntington's disease when she was pregnant with Smith and her sister. She also didn't know there was a 50 per cent chance she'd pass the gene confirming the disease's presence on to her kids.
When someone has the gene, they will definitely develop Huntington's disease, a progressive brain disorder that causes symptoms including uncontrolled movements, emotional problems, and cognitive impairment.
"We were all kind of blindsided by it," Smith told Out in the Open host Piya Chattopadhyay.
But the disease would soon make itself known throughout Smith's family.
"My uncle Brian found out that he had it first. And it just kind of exploded."
Panic spread through the family, as they discovered the implications of the disease and had to decide whether or not to get tested for it themselves.
When Smith's aunt Kim found out she had the disease, she decided to end her life after seeing what it did to Brian.
"She stopped eating. She took about seven days before she ended up passing away."
Smith said it's hard to see how the disease has ravaged her family.
"It's a little bit different for everyone but it eventually starts taking away your cognitive abilities. So it's almost like regressing, like when you're dealing with a 50-year-old woman, it actually feels like you're dealing with a six-year-old kid.
"Emotionally, my mom's regressing a lot, but she's still hanging in there everyday. She's super happy and loves her life."
Breaking the branch of your family tree
When she was 23-years-old, Smith decided to get tested for the disease herself. The test confirmed she did indeed carry the gene.
The discovery led Smith to decide not to have children of her own, after seeing what the disease has done to the people in her family.
"I would just rather not pass this on. And for me personally if I don't have kids, I will actually be the person who stops Huntington's in our family."
Despite everything her family is experiencing, Smith said they're still staying strong.
"My whole family's giant and loving and amazing. And they just want the best for the family and me. So that's all I can ask for."
Although she now knows the disease will eventually manifest itself in her, Smith says she chooses not to let it define her.
"It's not going to do anybody any good if I sit there with my grumpy face on all day and I'm just mad at the world about it. I mean you got to live your life like everyday is your last day."
This story appears in the Out in the Open episode "Family Tree".