South Ga. baby with rare disease passes away, family helping others afflicted with same disease

A Georgia family is sharing their story to help others after losing their baby to a rare disease. (Source: WALB)
Published: Jul. 28, 2022 at 5:57 PM EDT
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TIFTON, Ga. (WALB) - Baby Emi was just one of seven children in the whole world with the rare disease by the name of KIF1A Associated Neurological Disorder.

After suffering from a cold, baby Emi’s health took a turn for the worse.

Michelle Wilkerson is her mother.

“This time, I decided to let nature run its course because it’s only going to get worse,” Wilkerson said. “And she’s only going to suffer greater. So I decided to see if she could fight it on her own. We had all the equipment at home. I used the oxygen to keep up with her breathing and we used the suction machine a little bit and breathing treatments.”

Michelle Wilkerson, Emi's mother, center, with two of her other children.
Michelle Wilkerson, Emi's mother, center, with two of her other children. (WALB)

But Emi’s condition reached a point where the family decided to take her to the hospital.

“When she got at her sickest, we called the EMTs and loaded up in the abundance and went to the hospital so that they could keep her comfortable. Hospice came in the day before she passed,” Wilkerson said.

Michelle sais several KIF1A parents of deceased children reached out to her in support right before Emi passed. One mother even shared a story with her about how she saw a rainbow right after her child passed and knew it was a sign. Something Wilkerson witnessed in the hospital.

“Thirty minutes later, I’m holding my baby’s body in my arms and my father-in-law yelled my name. And I ran out of the room and there was her rainbow. And I know why. With her body in my arms, that was her telling me that I was okay,” she said.

Baby Emi passed away on July 22 at just 16 months old at Wayne Memorial Hospital in Jesup.

Wilkerson said Tuesday’s funeral was absolutely beautiful and that her family is doing their best to cope.

Wilkerson said Tuesday’s funeral was absolutely beautiful and that her family is doing their...
Wilkerson said Tuesday’s funeral was absolutely beautiful and that her family is doing their best to cope.(Michelle Wilkerson)

“We’re going to live. We’re going to live life to the fullest,” Wilkerson said. “We’re going to walk side by side and I’m going to help them as they help me get through this because it is devastating. And you know, just when you think you feel a little better, it hits you all over again.”

Wilkerson said being out of a job while trying to care for her children was tough, and she wants to use her foundation in Emi’s honor for the better.

“That’s what we want A Million Dreams For Emi to do is to help alleviate some of that financial burden for families and that’s what KIF1A.org already does,” she said.

Wilkerson said the biggest lesson she learned from her daughter’s passing is to live in the moment and to just enjoy life.

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