LITTLE ROCK, Ark. — March is National Trisomy Awareness Month, and one Arkansas girl's diagnosis of the condition isn't stopping her from shining bright.
Trisomy X syndrome, or Triple X, is a medical condition where a person has an extra X chromosome in every cell of their body. Normally, girls have two x chromosomes while boys have an x and a y.
With Trisomy X, the individual has three x chromosomes passed down to them. Down syndrome and Edward syndrome are some of the most common forms of trisomy.
While this condition may be a part of Halo Hunter's story, it's far from her defining trait.
"When we first found out that she was going to have an extra x chromosome, of course, I was scared because like what the world? You know, what are you going to do, how will I be able to deal with that? What challenges will we have," Halo's mother, Kafi Hunter described.
Like her daughter, Kafi herself has had a few rough chapters. She was diagnosed with preeclampsia and then HELLP syndrome.
She was able to get pregnant, but in several instances, unable to keep to her babies. However, on Easter Sunday, April 16th, 2017, the family's miracle baby made her debut.
"She had to come home on oxygen, that was kind of scary. But you know looking back now, I did it, right, like we got through that season," Hunter said.
While rejoicing in her child's resilience, Hunter noticed there wasn't much family-centered literature on what she was experiencing during this difficult time.
She turned that lack of knowledge into a way to bring awareness to the syndrome, by writing a book titled: "Exxtra Special A Miracle Named Halo.
Dr. Misty Virmani, an associate professor of pediatrics and neonatology at UAMS and Director of the UAMS milk bank, worked closely with Halo.
"Halo faced a few extra challenges in her young life when she was born very prematurely and she was quite sick for some time. But as you can see, now, she is just doing amazingly. That speaks to her resilience and also to her parents who took really good care of her and provided her those developmental steps," Dr. Virmani said.
She explained that Trisomy X is not as common or well-known as Trisomy 21, better known as Down syndrome, but certainly deserves our attention, compassion, and understanding.
"The Triple X or trisomy x syndrome, does have some associations with some developmental changes and differences in how an individual develops, but overall, they have normal lifespan so they can go on to have children. They have jobs, and they interact with society, much like anybody else does," Dr. Virmani said.
During National Trisomy Awareness Month, Dr. Virmani said to remember that children like Halo aren't defined by their condition.
"The condition is something that she has, and that's part of her life, but we don't identify her as the child with Trisomy X, we identify her as Halo, and Halo has extra needs and some things that are special about her," she added.
Halo continues to beam bright, showing us all that her story is still being written.
“Seven years ago, I was very scared to take my baby home. Seven years ago, I had postpartum depression. I was scared to change her diaper. I was scared to do anything," Hunter said. "Her name suits her, she's a light everywhere she goes.”