Ladybug Run raises awareness for rare disease


PORTLAND, Ore. (KOIN) — Finley Annabelle Dooley began life fighting for hers.

She was born with Congenital Diaphragmatic Hernia, or CDH. It means her diaphragm had a hole in it.

“That band of muscle that is the diaphragm has a hole in it that allows the belly content to come up into the chest. When it does that, because the lung is there, it compresses the lung,” Dr. Cindy Gingalewski, the Medical Director for Pediatric Surgery at Randall Children’s Hospital at Legacy Emanuel, explained.

“We were initially told she had a 40% chance of survival,” Finley’s mom Liz told KOIN 6 News.

Finley spent 49 days at Legacy Emanuel’s neonatal intensive care unit (NICU). She was in and out of surgery and breathing with the help of machines.

“As I watched her hooked up to ventilators fighting to breathe, it made me think about how I’d taken my lungs for granted,” Liz said.

It was in that moment that Liz felt a calling. She decided to plan a race to raise money and awareness for the disease. She called it the Ladybug Run.

“God had planted this idea for the race in my heart while she was still in the NICU,” Liz said.

Finley became healthier and on her second birthday in 2012 almost 200 people ran in the first annual Ladybug Run to raise money and awareness for CDH. The race is named after the Ladybug Room, the NICU where Finley received treatment.

The run has since taken on a life of its own and helped other children, like Kristen Bier’s daughter who is also a CDH survivor.

“CDH is as common as Spina Bifida and Cystic Fibrosis but it doesn’t have the awareness and the funding those diseases have,” Kristen said. “We feel so much gratitude that this race exists and that the foundation exists.”

Finely’s mom also has the admiration of nurses and doctors at Legacy Emanuel’s Randall Children’s Hospital.

“She’s an amazing person and most parents who have a child with a congenital problem don’t get involved like Liz gets involved,” Dr. Gingalewski said.

As Finley and her sister Rowan lace up for the fifth annual Ladybug Run on Saturday, Liz says she wants to spread her message of hope and raise money for research so more families can celebrate their survivors like she does every day.

“She’s a miracle. I cannot look at her and not thank God for the gift I’ve been given,” Liz said.

CDH occurs in one out of approximately 2,500 births. It’s relatively rare and here in Oregon doctors say survival rates are about 75%.

You can register for Saturday’s Ladybug Run here. It starts at 8:30 a.m. at Cook Park in Tigard.

Finley Dooley, July 21, 2016 (KOIN)
Finley Dooley, July 21, 2016 (KOIN)

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