"We've been living in darkness for so long with microcephaly," Lisa Koltay, 48, tells PEOPLE
Lisa Koltay, of St. Petersburg, Florida, has spent 18 years wondering why her son Daryle was diagnosed with microcephaly, a rare birth defect causing small head-size and incomplete brain development.
She now believes the mosquito-borne Zika virus might have been responsible.
“We’ve been living in darkness for so long wondering how Daryle got microcephaly,” Lisa Koltay, 48, tells PEOPLE. “I think we’ve finally found our answer.”
Doctors and neurologists confirmed that Daryle, 18, had microcephaly soon after he was born on February 26, 1997. But specialists were never able to determine the root cause – Lisa’s other two children, Barry Wilson, 29, and Shawna Mortham, 25, were born perfectly healthy.
“People look at Daryle and they think ‘Oh, your mother must have done this to you or somehow this is your mother’s fault,'” says Lisa. “And it was hard because for so long I had no idea how he was born with this, but I think I’ve finally found the reason. ”
When Lisa was 3 months pregnant with Daryle, she remembers walking along St. Pete Beach near her home and noticing a rash on the top of her feet. Although she didn’t think anything of it at the time, she now believes the irritation – a symptom associated with the Zika virus (along with fever, joint pain and conjunctivitis) – was a mark of the disease.
“I got bitten all the time by mosquitos when I was pregnant! It’s very tropical here and there’s tons of them flying around everywhere,” she says. “I never thought anything of it, until now. I had all of the symptoms associated with Zika when I was pregnant. We never traveled, so I would have contracted it in Florida.”
Microcephaly first made waves in global headlines when reports linked a spike in the number of babies being born with the condition in Brazil to the Zika virus that is transmitted by Aedes aegypti mosquitos. As many as 4,000 babies born with microcephaly in the South American country drew immediate attention from the Centers for Disease Control and Prevention and the World Health Organization, who designated Zika “a public health emergency of international concern.”
Lisa and her husband, Patrick Koltay, 51, first read about the potential Zika linkage two weeks ago and the couple “just knew” they had found finally found their answer.
“I said, ‘Oh, my gosh! This could be it! This could be the reason my son has microcephaly!’ ” she says. “I think this could be the answer I’ve been searching for all of my son’s life. For 18 years.”
When Daryle was born, his head measured only 12 inches around, landing him in the 3rd percentile for head circumference, according to the CDC Data Table of Infant Head Circumference Chart.
Lisa and Pat were told by doctors and neurologists that their son would live a “difficult and painful life with microcephaly,” with the potential of being blind, deaf and paralyzed. One neurologist even offered to give him cosmetic surgery to “make his head look normal.”
“He said, ‘Your son is going to look funny with a small head, so we are going to go ahead and recommend a cosmetic doctor for surgery,’ ” says Lisa. “I said no right away, absolutely not. I walked right out of there. Daryle is Daryle and I’m not going to change or alter him to please other people. He was born with microcephaly and I am going to accept it.”
Today, Daryle, who graduated from Pinellas Park High School in May with a special diploma, cognitively functions on a first-grade level. He cannot read or write and often has trouble expressing himself and displaying emotion. He cannot dress himself and struggles with balance and disorientation daily, requiring 24-hour care from his mother.
“Our life is hard, I’m not going to lie,” says Lisa. “Daryle requires constant care. He will be stuck at this first grade level for his entire life. And it’s hard on me as a mother because he isn’t able to show emotion.”
She adds, “But I know he loves us deep in his heart.”
Patrick Koltay, who owns an auto repair shop in St. Petersburg, says he works around 20 hours a day to support his family. The caring father compares his life to that of a mother raccoon that built a nest for her family in a 50-ft. pine tree on the Koltay’s property.
“Every morning and evening I watch the mama raccoon carry her babies up and down that tree with such strength and determination,” Patrick tells PEOPLE. “Seeing her do that twice a day, it gives me strength to do the same for my family. She’s carrying her babies and I’m carrying mine.”
Lisa and Pat hope sharing Daryle’s story will help the “scared families with microcephaly newborns to have hope.”
“I want people to know your child can survive and even be happy,” says Lisa. “Our son has lived with it for 18 years. We have ups and downs every day, but Daryle is a true blessing to us. We couldn’t love him more.
“I want all those new mothers to know that even though the road ahead is difficult, everything will be okay. Make sure you have a strong support system, and step back and remember to enjoy life and make sure your child is enjoying life.”
For much more on Lisa and Daryle Koltay, pick up this week’s issue of PEOPLE Magazine, on newsstands Friday