Tara Hackwelder, left, said her family devoted a lot of time to caring for her daughter, Elizabeth, right, when attempting to find a cause of her health symptoms. SUBMITTED PHOTO

Finding out their child is sick is every parent’s nightmare, and that’s made even worse when the disease is rare.

Tara and Jason Hackwelder went through that when their daughter, Elizabeth, was diagnosed with Zhu-Tokita-Takenouchi-Kim syndrome, caused by a medical mutation of the SON gene.

When they got the news, Elizabeth was one of the very first in the world diagnosed with the syndrome. She was experiencing developmental delays, but the doctors weren’t able to explain why.

“She did genetic testing and we got a call that she had a mutation that was identified as a brand new syndrome,” Tara Hackwelder said. “We were asked about letting the details be featured in a research article. You never wanna hear is something very rare, but any answer helps.”

In the wake of that, the family started the ZTTK SON-Shine Foundation as a way to connect families dealing with the new and very rare diagnosis.

Elizabeth died in 2021 at the age of 8, but the foundation is still going. And as reported in the Thursday, Aug. 28, edition of the Butler Eagle, members of the foundation will ring the opening bell at the New York Stock Exchange on Friday.

The bell-ringing follows hot on the heels of the foundation’s first conference, held recently in Boston. Tara Hackwelder said she hoped the bell-ringing, which will be broadcast on CNBC at 9:30 a.m. Friday, will help spread awareness about the syndrome and connect more people.

We hope it does, also. Caring for a sick child can be isolating, especially when the condition affecting them is rare. The ZTTK SON-Shine Foundation’s work can make a difficult task feel easier.

— JK