Five of six North Dakota siblings tested positive for early onset Alzheimer’s disease, in a situation that shook the family to its core. Now, the second generation is taking on a battle all its own.
Robin McIntyre, of Wyoming, was just 29 years old when she tested positive for the disease. In the years that followed, McIntyre, now 34, watched the disease claim the life of her mother, Lori, with the knowledge that she’d have a similar fate.
“My mom and four of her other siblings have the early onset genetic mutation,” McIntyre tells PEOPLE, noting that she learned of her own genetic status in 2012. “Based on scientific fact and history, my chances of getting early onset Alzheimer’s just like my mom are 100 percent.”
Along with Lori, Dean, Doug, Brian and Jamie DeMoe all tested positive for the disease — Karla DeMoe Hornstein is the only one of the siblings whose results were negative. Doug, 56, is in the late stages of Alzheimer’s in a nursing home. Brian and Lori passed away as a result of the illness at 54 and 56, respectively.
As she watched the disease rip through her family, McIntyre decided to find out her own results. And after learning her expected fate, her life was turned upside down. She says she even gave up her life-long dream of being a mother in fear that her children would suffer the disease as well.
“That decision came after a lot of struggle, and heartache, and back and forth and tears,” McIntyre says. “I don’t want to put a child through what my sisters and I went through.”
McIntyre says she kept the devastating news a secret for years after finding out, only telling her father two months after her mother died in February 2016. She never told her mother that she tested positive for the illness.
Now, McIntyre says she has dedicated her life to “science and research,” participating in studies to find a cure for the disease. And her sister Jessica McIntyre, who did not test positive for the illness, has vowed to stand by her sister each step of the way.
“We’ve always been a close family, but the thing with this disease has made us even closer and it’s pretty cool,” Jessica tells PEOPLE.
Jessica, who learned her status in 2006, said it was “awful” when she learned that her sister had tested positive for the illness.
“I felt guilty because I knew I wasn’t going to develop the disease,” she says. “Then immediately following it I was like, ‘Well, I’m the big sister and you know the big sister pants kick in and I’m just gonna do what ever needs to be done for her.’ “
Jessica, 36, and her husband are planning financially to care for McIntyre when symptoms of the disease set in. She says they have a “loose commitment” that she’ll help with what ever her little sister may need.
Along with Jessica, the youngest of the sisters, Chelsey McIntyre, says she’s committed to caring for her sister as well. Chelsey, who has two children and is expecting a third, did not test positive for the illness.
“When I found out that I did not carry the gene I immediately thought of Robin, you know, like she’s the only one,” Chelsey, 31, tells PEOPLE. “I see Robin going through this on a daily basis and I just admire how strong she is.”
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As for McIntyre, she says there’s a silver lining to the tragic situation — all thanks to her dedication to research.
“I honestly feel very fortunate to be in the situation I’m in,” she tells PEOPLE. “I’m able to make the most of a horrible situation which is also what my mom and her siblings did. They were really great role models for our generation.”
She adds: “They tackled the disease head on, without fear, without self pity. I feel like we all are getting to carry on [my mom’s] legacy by participating in research.”
The story of the DeMoe family is told in The Inheritence by journalist Niki Kapsambelis.