OVERLAND PARK, Kan. — Izzie Baldwin Duval of Overland Park knows what Alternating Hemiplegia of Childhood (AHC) can do to a child. She sees it every day.
Her 5-year-old daughter, Dallas, has the disease. Izzie tells me that only about 1,000 people have it worldwide.
"The chances of having this disease are called one in a million," Duval told me. "And so for a lot of our kids, they call them the one in a million ticking time bombs, because at any point, they could have an episode that could completely take away all of their skills."
Duval is part of a Facebook page for families impacted by the disease, so she's connected to people all over the world.
Recently, she saw a post on a page from a man in Gaza, whose 3-year-old daughter Julia was in the throes of an awful AHC episode.
"And when I realized that, I was like, 'OK, there's no one to help them,' because I knew the state of the war over there," Duval told me.
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She began communicating with the family, and has now set up a GoFundMe page to raise $50,000 so that Julia can leave Gaza and get the care she needs elsewhere.
I reached out to a couple of organizations about this story. CureAHC works with families impacted by the disease, and works to raise awareness about it worldwide. It is aware of Julia's story, and Duval's efforts, and is working with her as well.
So is Anera. It's a group that works to help refugees and others hurt by conflicts in Palestine, Lebanon and Jordan. It's existed for decades, and is aware of Julia's story as well.
One of CureAHC's board members told me that Julia has family in Egypt and Germany, and the goal is to get her and her family out of Gaza so that she can get the treatment that she needs.
Watch below to see my entire conversation with Duval about the disease itself, and why she wanted to help.
