Nearly four years ago, Ashequka Lacey was faced with a decision that would change her life completely.
She was 20 weeks pregnant with her second child and was about to learn the baby’s gender when the doctor noticed during an ultrasound that one of the baby’s femurs was abnormally small.
After a more in-depth ultrasound, her doctor revealed that her baby had a lethal case of dwarfism, and later, that his chances of surviving more than a few minutes were “almost zero to none.” At every appointment, her doctor advised her to terminate the pregnancy, she said.
But the Linden native and Near East Side resident researched her baby’s condition, thanatophoric skeletal dysplasia, a rare form of dwarfism. She learned of the dozen or so children living with thanatophoric dysplasia in the United States and others around the world.
The condition occurs in about two to five out of every 100,000 newborns, and those with the dysplasia are usually stillborn or die shortly after birth, according to the Journal of Medical Genetics. The term “thanatophoric” is Greek for “death bearing”; however, a handful of children with thanatophoric dysplasia have lived into young adulthood.
“Every appointment 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 felt was right. I had to give him a chance. Even if he wouldn’t have made it, at least I could say I did everything I could.”
Jakobi Bays, at the age of 3, has now reached a milestone few children with his condition have reached, and has made a lifetime out of overcoming challenges.
“They told me I would have him early; he could die in utero because of his condition. Jakobi was due on the 18th; he came on the 17th, full term. They said he wouldn’t cry when he was born; he was screaming,” Lacey said.
His journey and Lacey’s desire to build awareness about his condition have led her to write a children’s book and create a skincare brand
While Jakobi, who will turn 4 in January, has nurses, appointments and regular occupational, physical and feeding therapy, he also loves typical toddler things, like playing with his iPad, having preschool and giving his big brother a hard time. It’s that sibling relationship that is depicted in “Jakobi and Me,” a children’s book written by Lacey explaining Jakobi’s condition from the perspective of his big brother.
“We argue a lot. We scream at each other. He licks his hand and touches me knowing I don’t want him to do it,” his brother, Ameir Lacey, 12, said. “He’s a cool kid, though. But sometimes he is irritating.”
The book, self-published in 2020, talks about Jakobi’s life and what makes him different from other kids. It is in Columbus City elementary schools and available to purchase 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’re both older.
“He knows how to take care of Jakobi. He knows how to read Jakobi’s (heart rate and oxygen) numbers 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 just like, ‘Mommy, it’s OK if my brother needs more of your time because he needs you now.'”
Lacey also has documented their journey on Instagram, gaining a following of nearly 36,000 supporters and people curious about Jakobi. It has brought Lacey in contact with mothers of children with Jakobi’s condition 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 who learns to embrace her unique name, earlier this year. She has also helped other authors self-publish their books.
Lacey also started a skincare brand, Baby Bays Natural’s, which she created to treat eczema caused by Jakobi’s condition in 2020. She found a chemist out of Europe who came up with a formula to create a body wash, shampoo, body butter, oil and lip balm with natural ingredients that she was able to make herself. Her goal is to get the line in major retailers.
The Linden-Mckinley graduate said she wants to be one of the “amazing people” to come out of the neighborhood, and an example to the youth of what’s possible.
“They need to see more people who look like them doing it,” Lacey said.
Although juggling her day job at a bank, working as an author and business owner, and raising her two sons as a single parent, Lacey said she doesn’t “try to be superwoman.” It was her faith that led to her decision to move forward in her pregnancy, and now her drive and desire to advocate for her son that keeps her going every day.
“I feel like Jakobi’s testimony is what hope and faith can get you honestly,” she said. “This life isn’t for everybody. Jakobi takes a different kind of care, a different kind of mothering. (But) I never feel overwhelmed from being his mom.”
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