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Jax Bari shared an emotional letter with “World News Tonight” about his experience with the autoimmune disorder celiac disease.<\/p>\n
“Dear Mr. Muir, when I turned 8 in March, I wished for a cure for Celiac Disease for me and 3 million Americans with Celiac,” wrote Jax.<\/p>\n
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The 8-year-old said he watches the news every night and wanted to spread awareness of the disease that’s triggered by gluten and damages the small intestine.<\/p>\n
“I watch you every night with my dad,” he wrote to ABC News’ David Muir. “You are a great storyteller and I have learned a lot from you, including about the NIH.”<\/p>\n
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At least 2 million Americans have celiac disease, according to the National Institutes of Health. Other estimates, including from the University of Chicago, say it could be nearly 3 million.<\/p>\n
“Eating without fear is our hope. Food insecurity happens for Celiacs every day,” wrote Jax.<\/p>\n
On Jan. 14, Jax and his family, among other families in the celiac community, went to Capitol Hill for a bipartisan congressional briefing on the disease. The group lobbied for more research funding and food labeling.<\/p>\n
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“Solving Celiac could be the gateway to understanding so many other diseases. But we need a treatment that’s better than the gluten free diet,” said Vanessa Weisbrod.<\/p>\n
Both Weisbrod and her son, Brandon, have been diagnosed with celiac disease.<\/p>\n
“We need a big funding to make a big difference,” Weisbrod said.<\/p>\n
May is Celiac Awareness Month. Jax said he reached out to friends to also share their stories about living with the disease.<\/p>\n
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Maggy Beck, a third grader in Richmond, Virginia, said she struggles with being cautious around food.<\/p>\n
“I wish when I went to parties, I didn’t have to bring my own food and I didn’t have to worry about cross-contamination,” said Maggy.<\/p>\n
Matthias Brockington, a 10th grader from Norristown, Pennsylvania, and Ava, a sixth grader from Maryland, said the diet can be hard to follow — especially with limited gluten-free options.<\/p>\n
“The only treatment for celiac is a strict gluten-free diet which is pretty tough,” said Brockington.<\/p>\n
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“A gluten-free diet is really hard because not all packaged foods are clearly labeled as containing gluten. This makes it really hard to find safe, gluten-free food for people with celiac disease,” said Ava.<\/p>\n
For now, without a cure for the disease, Jax’s mother Leslie Bari is trying to help other families with celiac disease. She posts photos of gluten-free food or recipes that she finds.<\/p>\n
“My favorite foods are burgers, pizza, chicken fingers and fries,” said Jax. ” My mom has been able to find or make gluten-free versions of my favorite foods. I love cooking with her.”<\/p>\n