Mom helps girl in Gaza with same rare disease as her daughter

By Jamie Weiss

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    OVERLAND PARK, Kansas (KMBC) — Five-year-old Dallas Duval is what her mom calls a chatterbox. During our interview with mom Izzie, Dallas made sure to show us all of her favorite toys like any 5-year-old would. But Dallas is not like all girls her age.

“Dallas has a lot of special things about her,” Izzie Duval said. “She is creative, she is silly and she loves to sing. She also has a couple of ultra-rare diagnoses; she has something called alternating hemiplegia of childhood.”

Alternating Hemiplegia of Childhood, or AHC, is incredibly rare, impacting one in every million children.

“In the vast majority of the children who have it, It’s a very painful condition,” Dr. J.B. Le Pichon, a Pediatric Neurologist at Children’s Mercy Hospital and Dallas’ doctor. “It’s a disorder that causes some very painful what are called dystonia. Dystonia is like a cramp. So when you have a cramp, if you’ve ever had a cramp, you know what a dystonia feels like. Now imagine that affecting half or your entire body and going on for minutes to hours or sometimes even days. These episodes of dystonia can be extraordinarily painful, and in alternating hemiplegia of childhood in AHC, they alternate with episodes of hemiplegia hemiplegia, meaning a paralysis of half of the body. So all of a sudden, half of the body becomes limp.”

It’s a rare disease with no cure and no border. Half a world away, 3-year-old Julia Amjad Abu Zuiater lives in the Gaza Strip with AHC. She has been experiencing dystonia and paralysis since the war in Israel began in October 2023.

Izzie Duval connected with Julia’s dad, Amjad, on a support group for AHC on Facebook.

“This man had posted in the group that his daughter had been in an episode for about six months, and my daughter, at most, will be at 10 days, and that’s really severe. You should be in a hospital at that point,” Duval said. “He responded back are you a doctor and I was like no, I’m just a mom, but I just want to help.”

Two children — thousands of miles apart — fighting the same rare disease.

“Juila is 3 and Dallas is 5. They have a lot of similarities,” Duval said. “They have precious curly hair and like little chubby cheeks, and they love chocolate. It broke my heart because we have resources, we have doctors, we have therapy and help, and they don’t.”

“If you don’t have access to good medical treatment, it can be catastrophic,” Le Pichon said.

That’s why the Duval family is doing what they can to help. They’re partnering with the organization Cure AHC to set up medical care for Julia when she is able to leave Gaza with her family. Other organizations providing support include Anera and the Palestine Children’s Relief Fund, working to get them out of the country.

While the Duval family awaits word from Amjad of how Julia is doing daily, they look forward to the future.

“They feel like family to me now,” Duval said. “Like at the end of this, we really hope we can meet and have our girls play.”

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