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Hope pervades amid a struggle
By ERIC STIRGUS © St. Petersburg Times, published April 15, 2001 LARGO -- Jessica has been naughty. The 6-year-old, trying to divert a visitor's attention from her grandmother to Barney, the purple dinosaur, hits him with a small green toy shaped like a doughnut. "Tell the man you're sorry," her grandmother, Lillian Mazzaferro, admonishes. Jessica places her right hand on her heart. Like her idol Barney, Jessica stretches her arms and walks forward for a big hug. Jessica's apology is extraordinarily sweet. A simple sorry would have sufficed. But she is incapable of such simplicity. Jessica was born with a rare condition that prevents her from pronouncing words. She cannot say "Mommy" or "Daddy," or anything else. Jessica suffers from 5p- syndrome, or cri du chat (pronounced cree doo shaw), a disorder caused by the loss of part of the fifth chromosome. The name of the condition came from a French physician who diagnosed it in 1963 for the sounds its sufferers make when trying to speak. In English, the phrase means "a cat's cry." In addition to speech difficulties, cri du chat causes severe learning disabilities and problems walking. Most carriers have distinct physical features such as extremely round heads. Jessica's walk is wobbly because her right foot is wider than her left. She cannot walk long distances because she does not have strong muscles. Jessica's throat is smaller than most children's, which restricts her ability to speak.
Just don't tell that to Jessica's family. They dream grand dreams for Jessica. She'll be able to do just about everything most people can do, they say. "I dream of one day seeing her stand at the door and saying "Mom' or "Dad,' " said Jessica's mother, Cindy Mazzaferro, 32. "We hope for the best, but it's hard to say it will (happen)." " "Can't' is a word I can't understand," said her dad, Jim Mazzaferro Jr., 36. Jessica's family tries to treat her as they would if she didn't have a disability. At times, that can be difficult. When they go out for dinner, Jessica's parents have to warn the server to keep the utensils away from the child. Otherwise, she'll grab them and toss them around the restaurant. As a result, they do not take Jessica out for dinner often. Life with Jessica is not always easy, but her family is not bitter about the hand she has been dealt. "I know she was given to us because (God) knows we can handle it," her mother said. "She's wonderful. I wouldn't trade her for anything." Jessica Mazzaferro was born on Christmas in 1994. She is the first child of Jim and Cindy Mazzaferro. Jessica has a 12-year-old stepbrother named Eric. Jessica has brown hair, brown eyes and a curious mind. She often climbs the chair in her grandparents' family room to peer out their window if she hears a car passing by. She has curious taste buds. She eats asparagus and spinach, not top choices among most 6-year-olds. Jessica loves Mickey Mouse and Barney. Her family thinks Jessica's penchant for embracing comes from watching Barney, who is big on hugs. "She'll just watch that whole show and she won't move," her dad said. Initially, her family was not aware there was anything different about Jessica. When she was about 3 months old, they noticed that she didn't lift her head or roll over. They also noticed that Jessica's cries were muffled. A pediatrician told them she suffered from cri du chat. The revelation was devastating. "It was a little upsetting because we thought we had a normal child, which we do," said Cindy Mazzaferro. Physicians told the family Jessica probably inherited the condition from her mother. Mrs. Mazzaferro's fifth chromosome was broken off when she was born, but it reattached to another chromosome. Mrs. Mazzaferro wasn't affected, but passing on the defective chromosome resulted in missing genes that prevented Jessica's voice box and brain from forming properly, according to genetics specialists. The explanation of Mrs. Mazzaferro's role in her daughter's affliction created deep feelings of guilt. "It's pretty difficult because I would like to go out and do the girl thing," she said. "It upsets me a lot because I am the carrier." Her parents transferred their anguish into action. They took a crash course in cri du chat, learning as much as they could about the disorder. Social Security pays for all of Jessica's medical expenses, including visits to her genetics doctor, eye doctor, ear doctor, orthopedist, pediatrician and dentist. The parents surfed the Internet and found www.fivepminus.org, a Web site about the syndrome. The site is part of the 5p- (five p minus) Society, created in 1986 as a support group for families dealing with cri du chat. It has about 900 members. Last year, Jessica's grandparents took her to the society's annual convention in Miami. For Lillian and Jim Mazzaferro Sr., the experience was cathartic. "There are a lot of kids worse off than we are," her grandfather said. Jessica's grandparents spend an extraordinary amount of time with her. She sleeps at their home four nights a week. They live in a mobile home park in Largo near Jessica's school, Fuguitt Elementary. Her parents live in Pinellas Park and work nights, selling leather goods at motorcycle gatherings. Jessica usually comes home from school by 3:30 p.m. Like most 6-year-olds, she is a bundle of energy. She likes to climb on living room furniture and her toy chest. She scampers across the room as best she can with her arms extended for a hug. "She keeps us busy," her grandmother said. At school, Jessica learns sign language. Many of her classmates have Down's syndrome. Her grandparents keep a list of terms with their meanings in sign language in their living room. They can understand much of what Jessica tries to communicate. Jessica's family marvels at her ability to turn on their VCR and the controls to their organ. "She's just like any other kid, except that she doesn't say anything," her father said. She also has a remarkable memory: Jessica doesn't forget a face. But there are many things she has trouble doing. "Sometimes, you can treat her like a 6-year-old," her mother said. "Sometimes, you have to treat her like a 3-year-old." Jessica also has a terrible temper, which some believe is related to the syndrome. She is bony, but very strong. When Jessica doesn't get her way, she will fling whatever is in her sight across the room. She will grab hair. Because of her boundless energy and her short attention span, Jessica cannot be easily disciplined. Instead, family members divert her anger by giving her something else to do. "It's a little harder at times with her," her grandmother said. Her family vividly recalls when she slammed her hand against the bathroom door. Jessica couldn't make a sound that would alert them she hurt herself. Her family wonders whether they would know if she were really in trouble. Jessica's father is trying to set aside some money to put her in a group home if Jessica becomes uncontrollable when she is older. Despite these fears, her family tries to focus on the positive, of which there is plenty. Her balance is better. She no longer wears leg braces. She is starting to make more sounds. Jessica can complete some sentences in sign language. When the disorder was diagnosed, the doctor told her parents Jessica would not amount to much. "Put her in a home," Jessica's mother recalls being told. Last week, she rode to school next to another classmate for the first time. Previously, she had to ride in the back of the bus in her wheelchair. Now, she can be strapped to a harness. "I believe she is going to do everything a normal child does," her grandmother said. "She is even going to drive a car someday." For informationFor information about cri du chat, contact the 5p- Society at 1-888-970-0777 or www.fivepminus.org.
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