Chief Executive Officer
Kathleen Abels

“A hundred years from now it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove … but the world may be different because I was important in the life of a child.”
                                                                        —Unknown



Frank and Cindy share their story of Sara—the 2009 TARC Ambassador.

    Nineteen-month-old Sara DiBenedetto will serve as the 2009 Ambassador for the organization. TARC serves people with special needs, and selects a client to represent the charity’s mission in the community each year.
    Sara Joy DiBenedetto was born at North Oaks Medical Center on
April 9, 2007. Prenatal testing had indicated that Sara’s mom, Cindy, had some excessive amniotic fluid in the womb, but doctors did not assess or communicate any potential medical concerns for the baby’s health prior to birth.
    Immediately after delivery, little Sara was rushed to the Neonatal Intensive Care Unit due to breathing difficulty. Doctors discovered that she could not breathe normally unless she was positioned on her stomach, face down. Cindy and Frank DiBenedetto saw their baby girl four hours after she came into the world. Doctors explained at that time that Sara had a cleft palate and severe breathing problems. The next day a neonatologist diagnosed baby Sara with Pierre Robin Syndrome, a condition that is described as having a cleft palate, small lower jaw, and tiny, weak tongue. The small size and weakness of the tongue muscle caused it to fall back into Sara’s throat and block her airway, preventing her from breathing normally in a sitting position, or even laying on her back or side. The condition also made it impossible for Sara to eat or drink as infants normally do.
    The DiBenedetto family was devastated. Having lost a set of twins pre-term prior to the pregnancy with Sara, their hearts were overwhelmed with fear for their new baby’s future.
    “Would she lay face down for the rest of her life? Would she outgrow this condition? What would her little world be like?” they asked themselves, and were repeatedly asked by family and friends. Frank and Cindy’s other children, Nick and Lily, asked some of the toughest questions, filled with concern about their baby sister.
    “Our family didn’t know what to say, what the diagnosis meant, or what was going to happen for Sara,” says Cindy. “Answers were hard to come by, even from the medical team caring for her.”
    At three days old, Sara was transferred to Children’s Hospital in New Orleans. She had not eaten since birth. Sara underwent surgery for the insertion of a feeding tube, and was able to go home after 23 days in the hospital. She was discharged with Home Health to monitor weight and feeding. Cindy credits the doctors and her coworkers at North Oaks Pediatric Clinic for offering support, encouragement, and medical insight during the long hours and days of uncertainty in Sara’s young life.
    Just two weeks later, however, Sara was diagnosed with Failure to Thrive, having gained only two ounces since birth. Medication for reflux and new feeding methods finally proved helpful, and she began to gain weight and strength. At four months she began physical therapy, occupational therapy, and speech therapy at a facility in Hammond. The trips to therapy, however, were so exhausting that little Sara was too worn out to participate or benefit from the efforts. She was very upset and cried throughout the therapy sessions.
    Four-and-a-half-month-old Sara was still unable to eat by mouth and completely unaware of the world around her. Having to lay on her stomach for so long, Sara constantly held her arms out to her sides and had very little exposure to her home or family, simply because she could not physically look around from a sitting up position.
    Cindy decided to go a different route for therapy, and contacted the Louisiana Early Steps Program, who in turn put her in touch with a therapist from TARC. That therapist was Sue Mathes, an instructor and early intervention specialist who has served countless children through TARC for more than 26 years. When Sue and Sara got together, good things began to happen.
    Special instruction is a kind of play therapy that helps babies and toddlers develop fine motor, thinking, learning, problem solving and communication skills. Infants in Sara’s position are often impacted with a stunted sense of exploration and discovery. This causes delays in the ability to synthesize information, make choices, and communicate.
    Thanks to Sue and Shannon Stevens, an occupational therapist referred through the Louisiana Early Steps Program, Sara has come a long way, baby! Her most impressive strides are that she can now take all of her food by mouth and bring her hands together in front of her body, allowing her to hold toys and food and sippy cups. This new skill of manipulating her own arms also allowed Sara to roll over, push up and crawl - things she couldn’t do before with her arms out to her side. She has also gained a strong awareness of her environment, people, and activity going on around her.
    Watching Sara and Sue in a therapy session today, you would never have guessed this outgoing, adorable 18-month-old had survived such a frightening and uncertain future on the day she was born. It is through well-trained and dedicated staff members, and financial support from the community, that therapy services for small children are available in the Florida Parishes through TARC.
    “We are so pleased with the changes in our daughter’s life that have been made through Sue’s knowledge and her interaction with Sara in the therapy sessions,” say Frank and Cindy. “Because Sue and others like her are available to our community through TARC, we know and are grateful that TARC is making a difference for children with special needs.”
    As the the 2009 TARC Ambassador, Sara will be actively representing the organization at various community events throughout the year. Feel free to introduce yourself to Sara and her parents whenever you see them around town. You will be glad that you took the time to meet this precious young lady who has come so far in such a short time!

To contact TARC:
Email Dawn Sinagra or call 985.345.8811.