FORT WAYNE, Ind. (WANE) – Olivia wasn’t supposed to turn six. She wasn’t even expected to ever leave the NICU after she was born. But, Olivia doesn’t care what the odds are.
Olivia McCleary is special.
She was born July 24, 2016 at 23 weeks gestation. Olivia was one pound, six ounces and only 12 inches long. At the time, she was the smallest baby ever born in Indiana. She was on a ventilator in the Neonatal Intensive Care Unit for the first eight weeks of her life. Doctors gave Olivia a five percent change of survival.
Even in that tiny body, Olivia already had fight. She continued to grow, but had developmental delays and started having seizures.
“There was something different about these delays; something different about the seizures,” Dr. Lisa Bergeron, a Parkview pediatrician who specializes in developmental delays, said.
It wasn’t like anything she had seen in her nearly 30 years of practice.
Doctors kept doing tests and in 2021 Olivia was finally diagnosed at Peyton Manning Hospital with an extremely rare genetic disorder.
“Only ten people in the whole world ever had it and she’s the only survivor,” Katie Jackson, Olivia’s mom, said. “It’s called Pilarowski-Bjornsson Syndrome. She will never get better.”
There might not be a cure, but Olivia is out-living expectations.
“Everyone’s genetics are different. Her genetics are her own,” Dr. Bergeron explained. “Depending on what genes she’s missing or are duplicated, that’s what makes it all individual.”
“Ultimately she has months left with us. That’s what doctors say. However, she writes her own story,” Jackson said. “You can give me as many months or weeks as you think, but you’re not God. You’re not her. She’s sassy and she’s got a lot of fight.”
Olivia isn’t letting go. She’s living her life the only way she knows how; as a princess. She wants to be Elsa from Frozen.
In 2019, Make-A-Wish approved Olivia to go to Disney World for her wish. But, then COVID happened. She had a parade go by her house in 2020 instead.
The magic continued on July 24 this year with a birthday party in Fort Wayne fit for a princess. Around 200 people came to celebrate Olivia turning six.
“I try to convince her other kids don’t have birthday parties like this. She doesn’t believe me for a second,” Jackson said. “She was not supposed to celebrate this birthday. But, we’ve made it another year and we will celebrate it. And, it’s a way to tell everyone who supports us and loves us thank you.”
No one knows how much longer Olivia will be here. But, her family isn’t focused on that. They’re focused on the here and now -the joy Olivia spreads every day with her spunk and smile.
“She’s dying in front of us. But, it doesn’t both her. She just wants to color,” Jackson said.