Published: Jul 21, 2012 12:13 PM EDT
Updated: Jul 22, 2012 12:15 PM EDT

FORT MYERS, Fla.-- The Race for Baby C brought hundreds of people to downtown Fort Myers, to raise money and awareness for Carolena Long.

The almost 3-year-old suffers from a rare birth defect called Heterotaxy Syndrome, affecting her heart and other organs. Her mom, Ashley Long says, "she has a single ventricle heart, which means that all care for her is palliative, they can't fix her or cure her, so they try to prolong her life as long as possible. So the fact that she's here with us and doing as well as she is, it's pretty wonderful."

Carolena has a permanent feeding tube to get all her nutrients, and has undergone 3 open heart surgeries. Still, she is full of life and love, with hundreds of people coming out to support her and her family.

Ashley Long says, "we're very humbled that the community is so supportive of us and everybody who said a good thought or a prayer for her, we're so appreciative."

Last year's race raised about $19,000 and organizers hope to raise more this year.

A friend of the family, Carly Rainero, brought her family out to participate in the 5K. She says she was happy to support her friend. "I don't know how they do it, I don't think that I could have done it. They've made some great strides and they are a solid family and they stick together and it's heartwarming to see a family like that," she says.

More than 400 people participated in the race. The event also included games, food, and prizes.