Before being linked to the Zika virus, the neurological condition was rarely discussed

By Tiare Dunlap
Updated February 04, 2016 09:30 AM
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Credit: Courtesy Mighty Dylan Facebook

For Amy Ottaway, watching her son Dylan take his first steps just days short of his second birthday was “the most magical thing I’ve ever seen,” she tells PEOPLE.

That’s because at 2 months old, Dylan was diagnosed with microcephaly, a rare neurological condition that causes small head-size, brain abnormalities and possible reduced life expectancy. Because of this condition, doctors told Amy and her husband that their son would never be able to walk or communicate, and he would likely suffer from continuous seizures.

Until recently, microcephaly was rarely discussed and little understood. Now, as thousands of women in Brazil have given birth to infants diagnosed with the neurological condition that has been linked to the mosquito-borne Zika virus, the rare illness has become the center of an international emergency.

Seeing microcephaly become a staple in global headlines in a matter of days was an abrupt shift for Ottaway. Shortly after her son’s diagnosis two years ago, the Portland, Oregon, mom started searching for more information about the condition – and found very little.

“We had never heard of microcephaly before Dylan was born – most people hadn t – and it was such a scary period for us,” she says. “Like most parents, I dove in and tried to figure out the most I could about it, but because microcephaly is so uncommon, there wasn t much information out there, and a lot of what I found was very scary.”

While Dylan’s doctors noticed his head was much smaller than average at birth, they offered no explanation as to why. When Dylan was two months old, his parents took him to see a geneticist who gave the diagnosis – autosomal recessive microcephaly – meaning the condition resulted from a recessive genetic mutation carried by both of his parents.

The Ottaways were then told that their son would never walk or communicate, and that he’d suffer frequent seizures that would leave him unable to function. It was a crushing diagnosis that Amy remembers every day as she watches her now two-and-a-half year old son do what was thought impossible, and he continues to defy expectations.

“There were moments where I was absolutely convinced he was never going to walk and I could cry and be so sad that he had to struggle,” Ottaway recalls. “But every time I would get a little bit of doubt in my mind, he would take off and surprise me.”

Dylan has never experienced a seizure, and this year he began walking on his own. With continued help from occupational and speech therapists, Dylan is able to communicate using a handful of words, signs and gestures. He enjoys music class, spending time with his older brother, Jack, and meeting new people.

“Dylan is the most social kid I’ve ever met,” Ottaway says. “He loves everybody he meets. He’ll walk up to you the first time he meets you and give you a huge hug and a kiss and climb up on your lap.”

As fears swirl around microcephaly, Ottaway is sharing her family’s story to give hope to families facing the diagnosis.

“A lot of people are talking about the horrors of what can happen if you have a child born with microcephaly, and I feel that there’s a lot of positive things that can come along with that as well,” she says. “I wanted to be able to show how happy Dylan is and how much he’s been able to overcome the initial predictions and how kids can really overcome a lot of challenges with the right support.”

“It’s absolutely the most rewarding type of parenting I can imagine because everything that Dylan accomplishes is a miracle in our eyes,” she continues.

Ottaway says that she believes her entire family and community have been improved by knowing Dylan and watching him grow into the bubbly and cheerful 2-year-old he is today.

“There have been so many lives that have been touched by meeting Dylan, and I guess it just kind of causes us to step back and think about what really is important in life,” she says. “My 5-year-old Jack is the best big brother that Dylan could have and he’s so engaged with him and he celebrates every milestone that Dylan reaches.”

“I feel like Jack has become a better person because he’s watched Dylan go through what he’s gone through even if he doesn t understand everything,” she continues.

As awareness of microcephaly continues to spread, Ottaway is increasingly hearing from new parents facing the diagnosis. She says her advice is simple.

“Step back and enjoy your child and don t focus so much on the scary diagnosis part because you still have a perfect baby,” she says. “You get so wrapped up in – ‘We have to do all the research and we have to learn all the right information and talk to all the right doctors’ – and in reality, you really just have to fall in love with your child.”

You can learn more about Dylan Ottaway on his Facebook page.