16-month-old child dies from rare disease; family sharing story to help others

A Georgia family is sharing their story to help others after losing their baby to a rare disease. (Source: WALB)
Published: Jul. 30, 2022 at 5:08 PM EDT
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TIFTON, Ga. (WALB/Gray News) - A family in Georgia said their daughter recently died due to a rare neurological disorder, and they are sharing their story to help others.

The Wilkerson family said their baby, Emi, got a cold, but her health suddenly turned for the worse.

“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 and breathing treatments,” Emi’s mother, Michelle Wilkerson, said.

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

“When she got sickest, we called the paramedics and went to the hospital, but then she passed,” Wilkerson said.

Wilkerson said her daughter had a rare disease called KIF1A Associated Neurological Disorder.

The family said baby Emi died on July 22 at Wayne Memorial Hospital at 16 months old, with a funeral held on Tuesday.

“We’re going to live life to the fullest and help each other get through this because it is devastating,” Wilkerson said. “Just when you think you feel a little better, it hits you all over again.”

Emi’s mother said several parents who also lost a child to KIF1A have reached out to her in support. One mother shared a story about seeing a rainbow right after her child passed and knew it was a sign - something Wilkerson said she also witnessed in Emi’s passing.

“I ran out of the room and there was her rainbow. And I know why, with her body in my arms, she told me it was OK,” she said.

Wilkerson said being out of a job during this loss has been challenging, but she wants to use her foundation in Emi’s honor for the better.

“We want A Million Dreams for Emi to help alleviate some of that financial burden for families,” Wilkerson said.

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

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