Chris and Rachel Ostertag of Hillsboro, regular customers at Saigon Restaurant in Festus, were dining there one day, when one of the owners noticed a tattoo on Chris’ arm, setting in motion a fundraiser for the Ostertags’ son, Hans, who has a life-threatening disease.
Hans, who will turn 3 on June 22, has peroxisome biogenesis disorder.
“It is a rare genetic disorder,” Chris Ostertag said. “Unfortunately, it’s usually fatal in children. It affects everything. Hans has low muscle tone, seizures, liver disease. There’s no cure. There’s no effective treatment.”
However, the Ostertags hold out hope that research funded by the Global Foundation for Peroxisomal Disorders (GFPD) could lead to a better prognosis for their son.
To celebrate Hans’ third birthday, Nate and Sophie Dinh, the Saigon Restaurant owners, volunteered to hold a fundraising event to benefit GFPD. It will be held from 3-6 p.m. Sunday (June 21) at the restaurant, 343 N. Creek Road.
Chris Ostertag said the Dinhs became aware of his son’s condition when he and his wife stopped to eat at the Vietnamese restaurant after it reopened following the recent shutdown because of the COVID-19 pandemic.
“Nate saw my tattoo that says ‘Hope’ in Greek – as in, I hope they find a cure,” Ostertag said. “He asked what it meant. Then, he and Sophie asked if they could put this (fundraiser) on.”
All proceeds from the fundraiser will go to the GFPD, the Dinhs said.
The event will include live bluegrass music, games for children, raffles for vouchers donated by local businesses and “fun, social-distanced activities for adults and children.” There will be a car wash and a tent outside the restaurant. Attendees also plan to sing “Happy Birthday” to Hans.
Ostertag said social distancing is especially important at the fundraiser because he and his wife plan to bring Hans, who is at high risk for serious complications if he were to contract the coronavirus.
Anyone who is sick or who has been exposed to someone with COVID-19 is asked stay home.
“We’ll be there (at the Saigon Restaurant) for the event. We encourage others to abide by state and CDC (Centers for Disease Control and Prevention) guidelines while attending,” Ostertag said.
He said peroxisome biogenesis disorder is so rare that some of the physicians SSM Cardinal Glennon Children’s Hospital in St. Louis, where Hans is treated, had never met someone with the disease before.
However, Ostertag said he is encouraged by the work researchers have done involving the disease, which the GFPD has supported.
“There’s a lot of hope,” he said. “We are hopeful at some point there will be a breakthrough.”
The Ostertags also have a 4-year-old daughter, Sophia, who does not have the condition.
For more information or to donate to GFPD, visit the organization’s website at theGFPD.org.