‘Who wants to bury their baby’: Tift Co. family battling through child’s rare diagnosis

TY TY, Ga. (WALB) - Baby Emi is just one of seven children in the whole world with a rare disease by the name of KIF1A Associated Neurological Disorder.

Kif1a.org describes it as a severe and rare neurodegenerative disorder.

Michelle Wilkerson, Emi’s mom, said it’s been an emotional rollercoaster from the start.

“I had COVID/phenomena at the end of my pregnancy,” Wilkerson said. “They delivered her six weeks early because they felt like I was not giving adequate oxygen to her. And when she was born, she was born dead and it took a little while to resuscitate her.”

At first, doctors said Emi wasn’t getting enough oxygen. Then, she was diagnosed with cerebral palsy. Wilkerson said something wasn’t right — Emi was misdiagnosed.

“We had gone up to Atlanta to an appointment to have her little feeding tube changed out to a permanent button,” Wilkerson said. “I felt like something was going on. I felt like she was having infantile spasms. And sure enough, when we went to get her tube changed out, I just told GI I thought she was having infantile spasms. He didn’t even look at the video, he admitted us.”

Once Emi was diagnosed with KIF1A, Wilkerson took to a support group for special needs parents. After learning from more testing done on Emi, Wilkerson’s life changed forever.

“One message from another mother told me all that I need to know,” Wilkerson said. “She said, ‘I’m so sorry to tell you about the death of all of our babies.’ She said, ‘This is one of the worst variants. It takes everything from our babies. And it degenerates very rapidly.’”

Emi has the E253k variant of KIF1A, one of the rarest, most serious forms.

A single mom, Wilkerson had to stop working to take care of her child. She said there’s a child that’s over 5 still living with this disease. Others didn’t make it past 2 years old. Emi turned 1 in March.

Emi’s family is making the most of the time they have with her.

“Who wants to bury their baby?” Wilkerson said, sobbing. “But I’m already thinking about how we might touch others’ lives. That’s how we’re going to keep her alive.”

Wilkerson said she’s dedicating her life to bringing awareness to rare diseases in kids. And helping those families also going through something like this.

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