A new event, the Race For Baby C 5K Run/Walk, will be held on Saturday, July 23 starting at 8 a.m., beginning and ending in Centennial Park in downtown Fort Myers. Tucked between the signature “Summer Race Series,” the Race for Baby C offers participants a competitive run/walk course.

“We are very excited to coordinate this run/walk event to honor Baby C,” said Deanne DeCicco and Terry Mockler, close family friends. “She is an inspiration!”

Carolena Long — better known as “Baby C” — is a special little girl. Her bright and sparkling blue eyes and “go-go-go” personality belie the fact she was born with a broken heart. Baby C was born with Heterotaxy Syndrome, a rare birth defect involving the heart and other organs.

Due to the Heterotaxy Syndrome, Baby C has a Hypoplastic Left Heart (HLHS), no spleen and multiple gastrointestinal defects. Of her defects, the Hypoplastic Left Heart is the most severe, as Baby C has only a single ventricle heart. A normal heart has four chambers, including two ventricles. The left ventricle — the more muscular ventricle — is responsible for pumping blood to the body while the right ventricle, the smaller ventricle, is responsible for pumping blood to the lungs. When the left side of the heart is underdeveloped, the right ventricle must do both jobs, pumping blood to the lungs and to the rest of the body. The right ventricle cannot sustain both jobs for long so a series of staged open heart surgeries are performed in the first three years of life to provide relief to the heart. However, medical interventions for HLHS babies are life-prolonging and palliative; there is no cure.

According to Baby C’s doctors, until the last decade, infants with Heterotaxy Syndrome and HLHS did not survive early childhood. As a result, not much data exists to know long-term prognonsis.

Before Baby C was nine months old, she endured two open heart surgeries, two heart catheterizations, surgery to repair malrotation of the GI tract and placement of a permanent feeding tube. Her next planned surgery, the Fontan, will take place when she is 2.5 to 3 years old.

She may have only half a heart, but Baby C is full of life, charming everyone with her Miss America kisses, sweet hugs and no fear attitude. On July 23, Baby C will cross the finish line of her first 5K.

“Half a heart, full of life.”

Advance registration is available at www.therunshoppe.com. Cost is $25 per participant in advance or $30 on the day of the race. Children under 18 are $15. Race day registration opens at 7 a.m. All proceeds will benefit the Carolena Long Donative Trust.

Those who wish to benefit the Carolena Long Donative Trust, but are unable to participate in the 5K Run/Walk, may make a secure, online donation by clicking www.active.com/donate/BabyCdonations. Checks made payable to the Carolena Long Donative Trust may be mailed to 1027 Edgemere Drive, Fort Myers, FL 33919.

For more information about the Race For Baby C 5K Run/Walk, contact Deanne DeCicco at 239-340-2825.