Capital Region woman with gene for fatal brain disease shares story

Local

PITTSFIELD, Mass. (NEWS10) — Imagine watching your parent wither away and die from an incurable disease knowing full well that the same fate likely awaits you.

When Danielle Valenti was in college. she started to notice changes in her once exuberant, intelligent mom. Laura.

“Her stance was off. She couldn’t hold a conversation. and she was really paranoid.”

Her mother had been hiding the fact that she had Huntington’s Disease.
In December 2014, she decided to end her own life with VSED (Voluntarily Stopping Eating and Drinking).

After her mother died, Danielle got tested for HD. The results came back positive for the gene that causes it.

Huntington’s is described as being like a combination of Parkinson’s, ALS and Alzheimer’s. It is fatal and genetic. The children of those affected have a 50 percent chance of inheriting it.

“You’re just looking in a mirror and you watch your mother wither away and you put yourself in that situation. You question every movement. Did I just drop something or is that the onset of my disease?”

The Pittsfield, Mass., native says she and her mom’s diagnosis was a mystery because no one else in their family ever had Huntington’s. So she decided to do some family research.

“The research took me to my grandmother having an affair with somebody who had the gene. She didn’t know about [the gene], and he had another daughter. That would be my mom’s half-sister who also passed away from Huntington’s. My mom was afraid to tell me. She kept it a secret. My grandmother kept things secret from her, so I just wanted to end it.”

She is now an advocate pushing for Congress to pass a law giving HD families faster access to Medicare benefits. She’s also promoting local events like the Team Hope Walk Fishy Frolic 5K & 10K on August 24 at Jennings Landing in Albany. Click here for more information.

At 34, Danielle is around the age where symptoms begin.

“I do get nervous, especially now that I have McKenna.”

Her little girl McKenna, now 18 months old, was a surprise blessing for her and her fiancé. The baby was also tested. The results came back negative for the gene.

She says she’s staying hopeful that researchers may soon find a treatment. It’s that hope that keeps her going.

Copyright 2019 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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