LOUISVILLE, Ky. — TyiaLynn Scott’s daughter was diagnosed with a blood condition when she was five years old.

Scott said the condition is so rare that there is no name for it. The chronic illness causes internal bleeding that has required numerous hospital visits, blood transfusions, and in-home blood clotting infusions since the diagnosis.

“Chaotic. Just trying to keep her alive and then trying to deal with denied medical claims and getting things approved out-of-network, it was very hectic. It was a lot of added stress,” is how Scott described the first decade post-diagnosis.

So, in 2015, Scott left a consulting career to try a new path, one she’d walked before. “After I wasn’t spinning just trying to learn everything, that’s when I was like, ‘Okay, we can help somebody else,’ ” Scott told Spectrum News.

What started as a blog to help parents practically manage their critically or chronically ill child’s healthcare is now a non-profit called Critically Loved. The organization now services parents with children who have any special need, from autism to Zollinger–Ellison syndrome.

Critically Loved supports parents practically, emotionally, and spiritually. For example, with the help of volunteers, Scott distributes medical binders that are given out at the onset of a child’s diagnosis by partner medical offices.

Taryn Abbott, a parent involved with Critically Loved whose nine-year-old son was diagnosed with Duchenne muscular dystrophy as a toddler, found the medical binder especially helpful.

“When you talk to eight different specialists over a course of a year, it’s easy to get all of that mixed up, and so she [Scott] gave us tools to just keep it organized,” Abbott said. However, Scott said the heartbeat of Critically Loved is its bible study, which supports parents both emotionally and spiritually. “There’s lost of tears in that class; there’s lots of healing in that class, too…It’s good support for all of us,” Scott said.

She emotionally added, “I’m still healing, and I’m still learning what that means to get support from other people.” Scott understands firsthand the high costs parents face to provide their child with the best services and healthcare so Critically Loved doesn’t charge a dime.

There are many other resources and services that Critically Loved offers, including an expansion of counseling services through a grant received in June 2019.

As the only paid employee, Scott said she can’t do all that she does without the support of volunteers and the non-profit’s partners.

Currently, the Critically Loved serves Louisville, Lexington, Cincinnati, and a few other surrounding areas, but it is expanding.

There is also a wealth of information for anyone to peruse on the website.