5-year-old with rare immune condition roars through Philadelphia Zoo to raise awareness

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Saturday, July 15, 2023
5-year-old with rare immune condition raises awareness at Phila. Zoo
Ashton James and his family raised thousands of dollars to help other patients be 'Zebra Strong' when living with a primary immunodeficiency.

PHILADELPHIA, Pennsylvania (WPVI) -- "My son, who's five years old, is getting a 52-minute infusion weekly of a medication to build his immune system," said Regina James of Pitman, New Jersey. "So, I think it's important for people to understand and try to relate to these people that have primary immunodeficiency."

Yet James' son, Ashton, has a habit of not letting primary immunodeficiency get in his way of having fun.

Primary Immunodeficiency, shortened as PI, refers to more than 450 rare conditions that cause the immune system to function incorrectly. This can lead to more frequent infections and swollen spleen, lymph nodes, and more.

It is difficult to diagnose and can be mistaken for a common infection. Thus, people with PI are deemed the 'Zebras' of the medical world.

The symbolism is a flip on an old saying in medical school, "when you hear hoof beats, think horses, not zebras." But in this case, people with PI are the zebras because their true diagnosis is the uncommon answer.

The Immune Deficiency Foundation (IDF) has rallied around this concept, allowing patients to think 'Zebra Strong' and raise funds and awareness for PI.

Each year, the annual IDF Walk for Primary Immunodeficiency aims to facilitate such fundraising for research, advocacy, and scholarships. And for the second year, the local iteration of the event took place at the Philadelphia Zoo.

The roughly 500 registrants had a chance to roam around the zoo and keep their eyes peeled for their favorite black-and-white hoofed animals.

"Definitely our top fundraising in Philadelphia history," said Angela Ridenour, Assistant Events Manager for IDF. "Today, we were able to raise over $25,000."

But more than the dollar amount, parents like Regina James were happy to see a community rally around their brave children.

"I feel like once I had found the Immune Deficiency Foundation, I had kind of felt like I wasn't alone anymore," she said. "And to come together with a group of people that care so much about Ashton and our family, it means so much to me."

To learn more about PI and the Immune Deficiency Foundation, visit their website.

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