Almost four years ago, Ashequka Lacey was faced with a decision that would completely change her life.
She was 20 weeks pregnant with her second child and was about to learn the baby’s sex when the doctor noticed during an ultrasound that one of the baby’s femurs was abnormally small.
After further ultrasound, her doctor revealed that her baby had a fatal case of dwarfism, and later that her chances of surviving more than a few minutes were “almost zero”. At each appointment, her doctor advised her to terminate the pregnancy, she said.
But the Linden native and Near East Side resident has been researching her baby’s condition, thanatophoric skeletal dysplasia, a rare form of dwarfism. She has heard of the dozens of children living with thanatophoric dysplasia in the United States and around the world.
The condition occurs in about two to five in every 100,000 newborns, and those with dysplasia are usually stillborn or die soon after birth, according to the Journal of Medical Genetics. The term “thanatophore” is Greek for “death-bearing”; however, a handful of children with thanatophoric dysplasia lived to adulthood.
“Every date was so emotional,” Lacey, 33, said. “I think that’s why God blessed me with the things I have now, because I stayed obedient to what I thought was right. I had to give him a chance. Even though he wouldn’t have didn’t succeed, at least I could say that I did everything I could.”
Jakobi Bays, at the age of 3, has now reached a milestone that few children with her condition have reached and has spent her entire life overcoming challenges.
“They told me I would have him early; he could die in utero because of his condition. Jakobi was due to deliver on the 18th; he came on the 17th, full term. Screaming,” Lacey said.
Her journey and Lacey’s desire to raise awareness about her condition led her to write a children’s book and start a skincare brand.
While Jakobi, who turns 4 in January, has nurses, appointments and regular job, physical and food therapy, he also enjoys typical toddler things, like playing with his iPad, having preschool classes and giving his big brother a hard time. It is this sibling relationship that is depicted in “Jakobi and Me”, a children’s book written by Lacey explaining Jakobi’s condition from her older brother’s perspective.
“We argue a lot. We yell at each other. He licks his hand and touches me knowing I don’t want him to,” said his brother, Ameir Lacey, 12. “He’s a cool boy, though. But sometimes he’s irritating.”
The book, self-published in 2020, is about Jakobi’s life and what makes him different from other kids. It is found in elementary schools in Columbus City and can be purchased online and at Cover to Cover Children’s Books in Upper Arlington.
Ameir said he always wanted a brother and hopes to live with him when they are both older.
“He knows how to take care of Jakobi. He knows how to read Jakobi’s numbers (heart rate and oxygen) to know if he’s in distress,” Lacey said. “I’ll never forget when he was 9, Jakobi was in the hospital and (Ameir) was like, ‘Mom, it’s okay if my brother needs more of your time because he needs you now. ‘”
Lacey also documented their journey on Instagram, gaining nearly 36,000 Jakobi followers and curious people. This brought Lacey into contact with mothers of children with Jakobi disease as far away as Spain and Hong Kong.
Lacey has published books beyond “Jakobi and Me,” including “The Little Girl with the Big Name,” about a girl learning to kiss her unique name, earlier this year. She has also helped other authors self-publish their books.
Lacey also launched a skincare brand, Baby Bays Natural’s, which she created to treat eczema caused by Jakobi’s condition in 2020. She found a chemist outside of Europe who came up with a formula to create body wash, shampoo, body butter, oil and lip balm with natural ingredients that she was able to make herself. His goal is to get the line in major retailers.
The Linden-Mckinley graduate said she wanted to be one of the “incredible people” to come out of the neighborhood and be an example for young people of what is possible.
“They need to see more people who look like them do it,” Lacey said.
Although she juggles her daily job at a bank, works as an author and business owner, and raises her two sons as a single mother, Lacey said she’s “not trying to ‘to be a great woman’. It was her faith that led her to make the decision to move forward with her pregnancy, and now it is her will and desire to stand up for her son that keeps her going every day.
“I feel like Jakobi’s testimony is what hope and faith can honestly bring to you,” she said. “This life isn’t for everyone. Jakobi takes a different kind of care, a different kind of mothering. (But) I never feel overwhelmed being his mother.”
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