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An Unmedical Treatment for Boy's Liver Disease

When Jonah Hennenberg was 3 months old, he was diagnosed with a rare and chronic liver disease, biliary atresia. According to his mother, Kerrie Zurovsky, the disease causes a blockage in one of the bile ducts so bile cannot flow. Over time, it causes liver damage. Eventually, 99 percent of children with this condition will undergo liver transplant.

In Georgia, where Jonah and his family live, biliary atresia is the No. 1 cause for liver transplants in children in that state.

In his first years of life, Jonah spent a lot of his time in and out of the hospital and at doctors’ appointments being poked and prodded. When he turned 3, his mom says, Jonah became fascinated by superheroes.

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“We would go to the bank or the grocery store, and he would wear superhero costumes,” Kerrie says. “When he turned 3, I wanted him to be a monkey for Halloween, but he didn’t want to wear it. He found a Mr. Incredible costume and he insisted on being that. He wore the thing out before Halloween arrived. That was the start of collecting costumes.”

By the time Jonah turned 6, reoccurring infections and his inability to do the things a little boy wants to do—like ride a bike or jump on a trampoline—made it clear he would need a transplant.

Kerrie believes Jonah’s love for his costumes helped get him through his illness ...

“He was so young and explaining a transplant to a 6-year-old was hard,” she says. “Before his surgery, he had been asking for an Iron Man costume, so my grandmother, who would always buy him costumes, told him that after he had he had his transplant, when he woke up, he would have an Iron Man costume waiting for him.”

“When he woke up, he asked for it, and the day after his surgery, he was so swollen the nurse had to get surgical scissors to cut it open and get it on him.”

Kerrie believes Jonah’s love for his costumes helped get him through his illness, and, at times, Jonah’s belief in his recovery required the strength of a superhuman.

We went to the hospital once wearing a superhero costume, we got out of the car and Jonah broke out into hives and he said, “But I’m a superhero, how can I have hives? In his mind he was truly invincible.”

Jonah has had his new liver for almost six years and is thriving. While he has outgrown most of his costumes (does one really ever outgrow a cape?), his love for superheroes lives on through his artwork.

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“He draws comic books full of superheroes and has a book to learn how to draw superheroes and cartoons,” she says. “He channels that love now through art. You might not see him in a costume every day, but at every doctor’s appointment he is hauling a big notebook of drawings and brings his pencil to every exam.”

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Image via Amiee White Beazley

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