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Carrying Hope – How One CICOA Family Finished the Mini-Marathon

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Five-year-old Hope Parker finished the OneAmerica 500 Festival Mini-Marathon in 3 hours, 34 minutes and 23 seconds. She didn’t run or walk. Her parents, Jennifer and Andrew Parker, carried her in a backpack.

Hope has Hypoplastic Left Heart Syndrome, which is incurable. In addition to her heart condition and developmental delays, Hope has a history of grand mal seizures. In her short lifetime, she’s had 16 surgeries, including four open heart surgeries.

“She’s one of the longest survivors with the surgeries she’s had, and no one really knows what’s next,” Jennifer said. “We’ve learned to live with the uncertainty.”

The Parkers signed up for the Mini months ahead, but found out later they had missed the deadline to register Hope as a special wheelchair team participant. Because life expectancy is unknown, the Parkers decided they could not wait until next year. Undeterred, they went online and found a backpack they could use to carry Hope.

With just two weeks before the start of the race, her parents tested the backpack four times to see how Hope would respond. To encourage people to greet Hope and to help her endure the 13.5 mile journey, they added a sign to her backpack that read, “Say hi to me. My name is Hope.”The Mini was a true family affair for the Parkers. Hope’s parents took turns carrying their 32-pound daughter. Hope was fed through a G-tube so she remained hydrated during the race, which meant stopping for diaper changes. Mom also made a brief pit stop at a convenience store along the race route to purchase Cheetos and Doritos, two of Hope’s favorite snacks. And at mile 11, dad (an anesthesiologist) performed a health check.  As mom and dad pressed on, Hope’s siblings, 15-year-old Katie and 13-year-old Max, finished the race hours ahead.

“Hope has taught us how to embrace the moment,” said Jennifer. “Hopefully, we’re showing our kids things don’t have to be perfect for God to work in awesome ways.”

Home Life

Hope needs 24-hour supervision and help with bathing, dressing, hygiene tasks and feeding. CICOA Aging & In-Home Solutions provides care management to assist Hope with her daily needs and provides respite care for her parents. A registered nurse is available 40 hours a week, providing assistance with personal care and G-tube feedings. The nurse accompanies Hope to preschool and to occupational and speech therapy sessions as well.

“Nursing care is one of the main reasons Hope is doing so well,” Jennifer said.

At home, the Parkers try to have a normal family life and encourage Hope to try new things. Hope loves to play with her siblings and her best friend, Conner. She enjoys playing hide-and-seek, swimming and playing with her two dogs.

“We go on vacation, go roller skating and tubing on the lake,” Jennifer said. “We push the limits within a safe realm.”

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