Fort Wayne Girl Won’t Let Rare Genetic Disorder Define Her

FORT WAYNE, Ind. (WANE) – Olivia wasn’t supposed to be 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 on July 24, 2016 with a gestational age of 23 weeks. Olivia was one pound, six ounces and only 12 inches tall. 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 chance of survival.

Even in that tiny body, Olivia was already arguing. She continued to grow, but had developmental delays and had seizures.

Baby Olivia with mommy Katie

“There was something different about these delays; something different about the seizures,” said Dr. Lisa Bergeron, a Parkview pediatrician who specializes in developmental delays.

It wasn’t like anything she’d seen in her nearly 30 years of practice.

Doctors continued to do tests, and in 2021 Olivia was finally diagnosed with an extremely rare genetic condition at Peyton Manning Hospital.

“Only ten people in the entire world have ever had it and she is the only survivor,” said Katie Jackson, Olivia’s mother. ‘It’s called the Pilarowski-Bjornsson syndrome. She will never get better.”

There may be no cure, but Olivia exceeds expectations.

“Everyone’s genetics are different. Her genetics are hers,” explains Dr. Bergeron out. “Depending on which genes she’s missing or duplicated, that makes it all individual.”

“In the end, she still has months with us. That’s what doctors say. However, she is writing her own story,” Jackson said. “You can give me as many months or weeks as you think, but you’re not God. You are not her. She’s cheeky and she fights a lot.”

Olivia won’t let go. She lives her life the only way she knows how; as princess. She wants to be Elsa from Frozen.

2019, Make a wish Olivia approved to go to Disney World for her wish. But then COVID happened. Instead, she had a parade pass her house in 2020.

Then, last October, her fairytale dream of becoming Elsa came true, thanks to Give children the world village and Magical News.

The magic continued on July 24 this year with a birthday party in Fort Wayne fit for a princess. About 200 people came to celebrate Olivia turning six.

“I’m trying to convince her that other kids don’t have birthday parties like this one. She doesn’t believe me for a moment,” Jackson said. “She shouldn’t have celebrated this birthday. But we’ve made it another year and we’re going to celebrate that. And it’s a way of thanking everyone who supports and loves us.”

No one knows how long Olivia will be here. But her family isn’t focused on that. They are focused on the here and now – the joy Olivia spreads every day with her spunk and smile.

‘She dies before our eyes. But it doesn’t do both for her. She just wants to color,” Jackson said.

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