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Race for Baby C

By Staff | Jul 17, 2012

The Race for Baby C – a community 5K walk/run event – will be held this Saturday, July 21, at Centennial Park to benefit a very special baby.

Little 3-year-old Baby Carolena (or Carolena Long aka “Baby C”) has heterotaxy syndrome and has just survived a third heart surgery, said organizer DeAnne DeCicco, a Cape Coral resident.

She and co-organizer Terry Mockler from Fort Myers want to get the word out to the community and have people attend the event.

There will be a family fun day after the 5K with games, DeCicco said, and food and a large raffle.

“This is our second year hosting the walk/run and Family Fun Day. We did it at Centennial Park last year, too,” she said.

The response was phenomenal, she noted, Thousands upon thousands turned up to support the child.

“Last year we had 5,000 attend.”

And the best part, she said, was that many talked to the family about their own dealings with a devastating childhood illness, or just offered support.

“That really helped the family,” she said.

Other Cape Coral individuals support the cause.

“The person that hosts the race for us is Rachel Lee of Cape Coral,” she said. “She owns the Run Shoppe in Cape Coral.”

The parents of Baby C are Kevin and Ashley Long.

“They are extremely strong in their faith and have appreciated all of the community support to recognize the miracle that their child is,” DeCicco said.

Not only does Carolena have her parents, she has wonderful support from her two brothers, Kyle and Todd, who are both still in elementary school.

“She has two brothers and they have been extremely supportive and they love their little sister,” she said.

Of the toddler’s latest bout with illness, DeCicco said, “Her heart surgery was successful. She’s unfortunately now 24-hour oxygen dependent. We’re hoping that will change as she recovers.”

This isn’t the first fund-raiser DeCicco has done.

“Last year I ran the New York City Marathon for Baby C and raised money for her,” she said. “It was an experience of a lifetime, especially running it for her.

“Also, in April, we had a prayer vigil for the child and bake sale and every event has been a big success, mostly in part that she is just a miracle,” she said. “Everyone is inspired by her and her family.”

The event was held at First Assembly West Church in Cape Coral.

If you want to learn more, check out Carolena’s blog site at kyleandtodd.blogspot.com

Her last of her recent three open heart surgeries weren’t the only thing the toddler has had to endure. She’s had five heart catherizations; surgery to repair malrotation of the GI tract; and placement of a permanent feeding tube as a result of her heterotaxy syndrome, a rare birth defect involving the heart and other organs.

Of the defects, organizers report, a hypoplastic left heart (HLHS) is the most severe, as Baby C has only a single ventricle heart. They have given her a nickname or character trait – “Half a heart, full of life.”

Medical interventions for HLHS children are life-prolonging and palliative; there is no cure and long-term prognosis is uncertain, DeCicco said.

Proceeds from the Race for Baby C will help defray the significant medical expenses associated with her care, which many know can be devastating to a family.

If you miss the event and still want to donate, checks can be made payable to the Carolena Long Donative Trust and mailed to 1027 Edgemere Drive, Fort Myers, FL, 33919.