Young lady, family and friends overcome life’s hurdles together

Posted: Thursday, December 11, 2008 9:23 pm
By: Glenda H. Caudle Special Features Editor

 By GLENDA H. CAUDLE Special Features Editor Meri-Morgan Bowling turned 12 on Dec. 4 — a young lady brushing up against adolescence with a wide and wonderful world to explore. It was a momentous birthday, a birthday with promise. No other natal day in her young life has been decorated with such glowing possibilities. Meri-Morgan was born in Greenville, Miss., the place her parents — Darren and Dawn — and her older brother — Chase — were making their home at the time. Her mother’s pregnancy was perfect and her delivery was completely normal. The Bowlings brought their daughter home in a rosy glow of American family perfection: a handsome little boy and his beautiful little sister — the ideal Christmas card in the making. A potential football player and a promising cheerleader in a family where the gridiron sport provided not only endless entertainment but an actual paycheck for the coach-educator dad and his loved ones. Coach Darren Bowling would later bring his family to Obion County. Uneasiness began to creep in fairly soon in Greenville, however. The holidays were barely a memory before fear began to scratch at the hearts of Meri-Morgan’s parents. As she bathed and dressed her daughter to visit the pediatrician for her six-week check-up, Dawn Bowling tried to think how to broach her concern that her dark-haired, precious little girl might be blind. The Bowlings were, after all, experienced parents at that point. They knew Meri-Morgan was not focusing on objects that should have held her attention for several seconds. Something was wrong. The questions, as far as they could determine at that point, were simple: What is wrong? Can it be fixed? The answers were anything but simple. Because neither Meri-Morgan’s doctor nor a score of other specialists and physicians of all types knew what was wrong with the Bowlings’ daughter. Not blindness. Not a neurological problem. Not a musculature problem. Not a skeletal defect. Not this. Not that. Not anything anyone could identify. Not something any specialist could fix. Four years. Four years of loading up the car and then buckling Meri-Morgan in her car seat for yet another search for a diagnosis that had to precede any effective treatment — if there was a treatment. Four years of observing increasingly disturbing developmental delays. Four years of searching through books and magazine articles and online sites. Four years of sharing stories with other families whose situations sounded remotely similar, in hopes that some piece of information would work to Meri-Morgan’s advantage. Four years of looking in vain for some sign of improvement, some glimmer of hope. By the time the Bowlings had “toured” the South in hopes of an answer and had turned, at last, to physicians at Johns Hopkins University in Baltimore, they knew a host of things they were not going to have to face. But they were no closer to determining the actual nature of the battle they would clearly have to fight. Dawn Bowling had, however, determined this was the place to make her stand. “I literally walked in the place and said, ‘I’m not leaving until you tell me what is wrong with my baby.’” For three days, specialists probed and examined and tested — spinal taps, MRIs of Meri-Morgan’s brain, blood work-ups for chromosome charting. And when they were through, all doctors could say was, “It will take a while — from six to eight weeks. Go home. We’ll call you.” It wasn’t what the Bowlings had come to hear. But it was all they were told. So they headed back to Mississippi with their daughter who could not speak, could not focus her eyes for any extended time, could not sit erect without assistance, could not crawl, could not walk, could not manage a spoon or fork, could not draw simple stick figures, could not dress her baby doll, could not eat table food. But who could smile. Who could cry. Who could reach for an object (the first developmental milestone she met at age 1). Who could roll — oh, could she roll, beginning at 18 months — and who had thus staked out her territory all over their home by the time she was 2. Who could love. Who could energize her parents and her brother and her extended family with a determination to help this special little girl discover the limits of all she could be and then to help her push on those limits with all their strength and purpose. Who could inspire her father to write a song: “Angel With Two Broken Wings.” The first answer The call came from Baltimore. “It is called Chromosome 1p36 Deletion Syndrome,” the voice said. At least, there was now a diagnosis, a place to start. What the voice said next was not encouraging, however: “It is still very rare. It was first diagnosed in 1992 and no one is researching it at this time. There is no prognosis. We have no idea what to expect. Your daughter is the first case we have diagnosed here. We don’t know where to tell you to go next.” The Bowlings did go somewhere, however. They scoured Web sites and books and any other source they could lay their hands on. “The oldest living person I could find with Chromosome 1p36 Deletion Syndrome was 68 years old,” Dawn Bowling says. “The mildest case I found was a 9-year-old functioning in a 5-year-old kindergarten class. We found there was a range of developmental delays, but no one could predict where a child would fall on this range. Since Meri-Morgan’s birth, an amniocentesis test that determines the condition prior to birth has been developed, but in 1996, there was no such test. Normally, there are heart problems associated with the deletion, but Meri-Morgan has not experienced that. Typically, children like her have seizures. She does experience those, but they were being controlled through medication even before we went to Johns Hopkins.” Chromosomes are the parts of human cells that contain genetic information. Chromosome 1 is one of the 23 pairs of chromosomes present in human beings. People normally have two copies of this chromosome. Chromosome 1 is the largest human chromosome and represents about 8 percent of the total DNA in cells, according to information gathered from a Web site about the condition. The site goes on to say that the “p” stands for the short or “petite” arm of the chromosome. “36” indicates the location of the deletion on the chromosome. Patients may have different-sized pieces of the chromosome missing and this can result in characteristic variability. Children with Chromosome 1p36 Deletion Syndrome rarely acquire their chromosome disorder from their parents, although some do. Some common features of 1p36 are developmental delay, learning disability, hypotonia (low muscle tone), feeding difficulties, distinctive facial features, hearing loss, microcephaly, heart problems, seizures, vision defects and a large fontanelle that is slow to close. The severity of the associated disorders varies, but the physical features of these children are strikingly similar, the site reports. The disorder affects approximately 1 in 5,000 to 1 in 10,000 children born. Another name for the condition is Monosomy 1p36. The monosomy can be “pure” or can occur in connection with additional chromosomal imbalances. From then to now Meri-Morgan, the “professional roller” as her grandmother “Kiki” Morgan began calling her once she had mastered the ability to maneuver around furniture and get wherever she wanted to go in her home, made little additional progress beyond that skill for the next nine years, however. While there was some improved head and trunk control by the time she reached her 11th birthday, it could only be described as minimal. Meanwhile, twin siblings Taylor and Tyler Bowling joined the family Dec. 22, 1999, and the Bowlings moved to Louisiana and then on to northwest Tennessee, where Darren Bowling was named head football coach first at Obion County Central High School in Troy in 2003, then at Dyersburg High School in 2007. In early 2008, he was tapped as the guy in charge of the Purple and Gold pack at Union City High School and the family returned to this area. For the five years the family has lived in Tennessee, physical therapist Kelli McBride has visited the Bowling home twice a week and put Meri-Morgan through a series of movements that never seemed to actually prove effective in reaching new milestones, but that did positively affect her health. Nurse Jackie Northam became a part of the team that was dedicated to Meri-Morgan’s well-being as well. She spent every weekday from 8 a.m.-5 p.m. at Meri-Morgan’s house and performed whatever assistance the little girl needed. Meanwhile, Meri-Morgan grew taller even while she made little developmental of strength progress. Surrounded by parents, two brothers, her sister, her grandmother, her therapist and her nurse, she seemed to know she was loved and she gave every proof of returning it and of forming preferences and dislikes all her own. And then, slowly at first, but soon with ever-increasing intensity, Meri-Morgan began to display new strengths. Her therapist and nurse noticed the changes first. In September, it became apparent that the Bowlings beloved oldest daughter was gaining muscle mass. The change was most evident in her upper thigh muscles, which clearly “felt” different when examined manually. “Kelli started standing her up first,” says Meri-Morgan’s mother with a grin. “Then the walking started, first with Jackie holding her hands and Kelli behind her on knee pads, holding her hips. That was in October. By mid-November, it was only taking one person supporting her under her arms from behind.” No one in the office of The Messenger will soon forget Meri-Morgan’s visit to see her friends there and to surprise them with her newly-developed mobility. Some of her fans, including Messenger sports editor Mike Hutchens, watched in awe as she was lifted from the family van and as she stood erect, leaning back on her nurse for support. To see her upright was stunning, but then Meri-Morgan began to move her feet forward under her own steam, backed by her favorite nurse. She walked several paces toward the door, through the portal and into the office itself, while Hutchens and others marveled. And when she decided she had “wow”ed her audience enough for one visit, she sat on the floor without support. There were cheers. There was applause. There was praise. There were happy tears. But that was not the best show of Meri-Morgan’s day. A short time later, she showed up at the office of the Bowling family physician, Dr. John Hale. “When we walked her into his office that morning, he was astounded. He has no medical explanation for what has happened,” Meri-Morgan’s mother says. Since early autumn, Meri-Morgan has gained two inches in muscle mass in her thighs. She is able to see and pick up cheese puffs off her wheelchair tray and move them directly to her mouth — and she will eat half a bag if no one stops her, Dawn Bowling says with a laugh. Clearly, her arm coordination is improving, even as her lower body extremities and trunk gain strength. Doctors say her vision has always been perfect, but the lack of muscle control around her eyes has made it extremely difficult for her to focus. Her ability to spy the cheese puffs she loves seems to indicate improvement in that ability, as well. While her speech has not progressed, her mother, who is a trained speech therapist, says she has created her own “signs” for “yes.” “She may have been doing that even before the last six months, but we just put it all together and began to understand her about then,” Mrs. Bowling explains. “She clearly comprehends questions and can respond affirmatively. We are working on a sign for “no” and Jackie and Kelli think she is using a closed fist to indicate this at least 50 percent of the time. The doctor who first diagnosed Meri-Morgan has since left Johns Hopkins and has no idea the progress her “first” patient has made. The young lady’s on-the-scene physician and her parents continue to be mystified but elated at her progress. “We all think it’s time, since something has clearly begun to happen to Meri-Morgan, for her to begin getting some intense physical therapy. There is a foundation to build on now,” Mrs. Bowling says. The family’s quest for optimum help for Meri-Morgan is now leading them to Michigan for a two-pronged approach to helping this budding young lady be all she can be. “I started researching the suit therapy that is offered in Wisconsin. Mayci Shea Hogg from Samburg went there earlier this year. I found the man who invented the suit and he and his family are in Michigan now at the Pediatric Fitness Center. Richard and Izabela Koscielny are both physical therapists and are certified first class physical trainers. One of their two daughters has cerebral palsy. They invented the suit therapy for her and Richard Koscielny will be working with Meri-Morgan himself when we go to Michigan Jan. 5.” In addition to the therapy she will receive at the Pediatric Fitness Center, Meri-Morgan will also be involved with a hyperbarics program, much like the one Mayci Shea Hogg was introduced to in Wisconsin, each day. The Bowlings have been advised that vision is usually the skill most significantly improved by hyperbarics. In the developmentally delayed children who are treated with hyperbarics (this includes children with a variety of developmental disabilities and not just Chromosome 1p36 Deletion Syndrome), 50 percent show major improvement visually and cognitively, 20 percent show small improvement and 30 percent seem unaffected. The special daily suit therapy will focus on movement and will involve Meri-Morgan’s wearing the “outfit” developed by the Koscielnys in 2002 for three hours a day, five days a week, for three weeks. The weighted suit has a head piece and shoes as well as material that covers her body. It is designed to keep her body in a midline position to help her learn balance and coordination. The suit has numerous bungee cords attached to it that will be paired with other pieces of equipment to provide resistance so she can gain even more muscle strength. Meri-Morgan, her mother and her nurse will be chauffeured by her father to Michigan. Plans call for Darren Bowling to fly home once the girls are settled, leaving them the car so they can navigate from appointment to appointment through their three busy weeks. He will fly back to Michigan and help them drive home when they finish the pair of therapies Jan. 23. To show their love and support for the family and to act on their faith in Meri-Morgan’s future, friends of the family are hosting a fund raiser Dec. 21. A fish fry is planned in the family life center of Union City First United Methodist Church at 420 East Main St. following the morning worship service that will begin at 10:50 a.m. and will feature a special program of Christmas music. The public is invited to attend the service and the fund raiser meal. Her highest potential. That’s what Meri-Morgan’s family have always wanted her to achieve — the promise God has always had for her. The possibilities now, suddenly, seem much broader. And so her mother’s heart-felt and faith-filled request: “Just pray. That is most important.” To contribute to the fund set up for the family’s expenses in Michigan, send checks to First Citizens National Bank in the name of Meri-Morgan Bowling Fund in care of Darren Bowling and Dawn Bowling. Mrs. Caudle may be contacted at glendacaudle@ucmessenger.com. Published in The Messenger 12.11.08

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