Urbana family hopes to bring awareness to rare diseases with their story

URBANA, Ill. (WAND) — One local family is sharing their tragic loss to advocate for others.

In 2017, Chris Ostertag's three-month-old son Hans was diagnosed with a rare disease called Peroxisome Biogenesis Disorder – Zellweger Spectrum Disorder. Hans passed away in 2023 at the age of 5.

According to the Global Foundation for Peroxisomal Disorders, the disorders are genetic and usually terminal in childhood. 95% of rare diseases have no FDA approved drug treatment

While there was no cure or treatment available for Hans, the family found solidarity among others impacted by the disorder.

"Through the Global Organization for Peroxisomal Disorders, we would go to Rare Disease Week on Capitol Hill and lobby with other parents and other people impacted by rare disease for things like increased NIH funding, FDA funding, where a lot of the research for rare diseases happens."

Ostertag said that he finds it vital to stand beside those who have been diagnosed with rare diseases.

"The importance of raising this awareness for me, is standing in solidarity with these patients and families out there who are on this journey and just thinking about the people in our community, at our work, at our children's school or just generally in our area that may be impacted by rare disease."

Rare Disease Day falls on the last day of February every year. To show support during the day, advocates wear stripes in honor of an unlikely animal.

"The zebra is kind of the symbol of rare diseases because of the old medical saying 'when you hear hoof beats think horses,'" Ostertag explained. "So the idea being, when you are diagnosed think of a common explanation for that, but in the cases of rare disease these are the uncommon explanations."

To learn other ways to show support during Rare Disease Day, click here.