Early-Onset Alzheimer’s Ruined This Woman’s Dreams of Having Children

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Alzheimer’s is one of the most devastating diagnoses a person can get. People tend to think of it as an old person’s disease, and it’s agonizing enough to watch a grandparent or elderly parent go through, but sometimes it manifests early, and that’s why one woman says she’s been forced to give up her dreams of having children and a family, because she was just 29 years old when she learned she would develop early-onset Alzheimer’s, just like her mother.

According to PEOPLE, several years ago Robin McIntyre’s mother and four of her mother’s five siblings all tested positive for early onset Alzheimer’s. Their father was diagnosed with the disease in his late 40s, and of his six children, five of them–including McIntyre’s mother–tested positive for a genetic mutation that causes early onset Alzheimer’s. It was a devastating discovery, and because it is genetic, Robin McIntyre knew there was a good chance it would happen to her, too. At just 29 years old, when many of us are still thinking, “How late can I stay out at this hipster cocktail bar on a work night without looking weird in the morning?” she had herself tested for the gene that caused early onset Alzheimer’s in her mother and uncles. When the test came back positive, it was basically a death sentence.

Robin McIntyre’s mother developed Alzheimer’s at 50 and died at 56, which is about the same age at which two of her brothers passed. Robin McIntyre is 34 now, and she’s been forced to make plans for when she starts declining due to Alzheimer’s, instead of planning to raise babies and send them to school and see them play sports and learn to read and maybe go off to college.

McIntyre says she’s decided not to have children, because the risk of their carrying the gene that causes early onset Alzheimer’s is too high.

It’s very sad, because the family was something she had always wanted, but her decision makes a lot of sense.

“That decision came after a lot of struggle, and heartache, and back and forth and tears,” McIntyre said. “I don’t want to put a child through what my sisters and I went through.”

McIntyre does have two sisters who were fortunate enough to test negative for the gene that killed their mother. McIntyre’s younger sister has three children, and both her sisters say they’re committed to taking care of her when her health starts to decline.

Robin is participating in Alzheimer’s research, including a trial to try to find a drug that can stop or slow the disease before symptoms begin to appear.