‘There’s not enough research’: Mom suffers three strokes during Fabry Awareness Month
By Sahana Patel
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WEST BOISE, Idaho (KIVI) — A Southwest Boise mother who serves as the primary caregiver for her two adult sons with disabilities is asking for help after surviving three strokes in a matter of days.
Mandy MacNeil has battled Fabry disease for most of her life. The rare genetic disease prevents the body from breaking down certain fats, causing them to build up and damage organs over time.
Last Friday, after finishing her shift as a certified nursing assistant, MacNeil felt something was wrong and drove herself to the hospital.
“And I was like, I almost hit your building. Take my keys. Please help me,” MacNeil said.
MacNeil suffered a stroke that day and has had two more since. She is currently in a Boise rehabilitation facility focused on recovery, but her inability to work has drastically changed her family’s financial situation.
“I’m the one that does everything. I usually pay all the bills, buy all the groceries. I can’t do that right now,” MacNeil said.
Family members are stepping in to help, including Jasmine Wilson, her son’s fiancé, who organized a GoFundMe campaign.
“I just couldn’t sit back and watch Mandy struggle with that alone, so I decided that we were going to try to help her in any way we could,” Wilson said.
MacNeil was not diagnosed with Fabry disease until 2003. Because she was not tested early, she said treatment came too late, leading to strokes and heart problems since she was 19.
“Like say, back in 1980, if we would have known, we could have got tested, and we could have got medicine,” MacNeil said. “Even with the medicine, it still causes destruction and all that, but that’s cause there’s not enough research.”
April is Fabry Awareness Month, and MacNeil hopes more research and awareness will help others avoid what she has experienced.
“People are getting a little bit more aware of it, and they are doing newborn screening now,” MacNeil said. “I’ve seen kids as young as five get treatment, and they start right away. And that makes them live a lot longer, and they don’t have many problems.”
After spending 35 years helping others as a certified nursing assistant and med tech, MacNeil said she is grateful not to be facing this alone.
“I try to help everybody. And take care of everybody else. So the fact that somebody else is gonna help me and take care of me feels very blessed,” MacNeil said.
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