CHARLESTON, Ill. (WCIA) — It’s been about three and a half years since now-13-year-old Ma’Liyah White nearly drowned. Her family has followed her in and out of hospitals and to and from occupational therapy, all while hoping to learn more about her ongoing medical issues.

Now, White finally has the answer to what’s been causing ongoing seizures: Lance-Adams Syndrome. It’s a neurological complication that can happen after a person is deprived of oxygen. 

“There’s not many people in the world that actually have this,” White’s grandfather and caretaker Bill Croy said. “Being able to educate myself and educate others, to be able to help others throughout the world or whoever has this is going to be tremendous for us.”

Less than 150 cases have been reported in medical literature worldwide, according to the National Institutes of Health.

The road to the long-awaited answer started back in 2022 when White chased her dogs onto an icy pond in Charleston. She fell under and was trapped for 30 minutes. Her abuelo, Croy’s husband, Carlos Serafin, died after jumping in after her.

“Carlos is there every day,” Croy said. 

Croy’s grief of losing a partner is remedied knowing how proud he’d be of the incoming eighth grader. 

“Going from where your child couldn’t even do anything, being told that her life could end when they went to pull out the breathing tube, to where she’s at now is just mind blowing because she’s just been a fighter the whole entire time,” Croy said. 

White’s diagnosis gives her family hope for the future, seeing that the sky is the limit for the honor roll student.

“I recently joined a couple Facebook groups and everything on those Facebook groups is Ma’liyah,” Croy said. “The videos people have posted and stuff and there’s people walking, so there’s very much a hope for her to be able to stand take a few steps.” 

He knows it’s only a matter of time till his sassy teenager will be defying the odds once again.

“I always tell Ma’liyah when she’s sitting she’ll be like, ‘Papa I need’ and I’m like, ‘Ok, go get it,’” Croy said. “You’ll see her think in her head ‘Oh, I can stand’ and then she stops because she used to be able to do that. That’s not a teasing part, I tell her that because one of these days I swear she’s going to stand up on her own.”

Croy said White was recently put on a new medication that has been calming her down. Doctors are now looking at putting in two pacemakers that Croy said could stop White’s seizures before they start.