If 1 in 2,000 girls are born with Turner Syndrome, the odds of two little girls with Turner Syndrome meeting each other in line at their kindergarten orientation must be, well, too serendipitous for even the oddsmakers.
Four years later, Marlie Workman and Madison Pritt are third graders, BFFs and self-described “butterfly sisters” navigating life and a shared genetic condition together, one step at a time.
Turner Syndrome occurs when baby girls are not born with the usual pair of two X chromosomes. Instead, their genome is missing all or part of an X chromosome, leading to health issues that may include short stature, heart defects, scoliosis, hearing and vision problems, underactive thyroid, delayed puberty and infertility. The syndrome is also marked by physical features such as swollen hands and feets and a wide or webbed neck.
The girls’ moms, Branon Workman and Jessica Pritt, remember their chance meeting at kindergarten orientation for Northwestern Elementary School in Wayne County like it was yesterday.
“All of the kids were lined up for orientation and I saw Madison and thought I noticed some Turner Syndrome markers,” said Branon. “For one thing, Madison, like Marlie, was shorter than the rest of the children. I debated whether or not to say something. But I did. Jessica looked shocked and said something like, “How did you know that?”
The chance encounter has grown into a lasting friendship for both Marlie and Madison, as well as their mothers.
“I have found support in chat rooms and Facebook groups, but I love that I can call Jessica,” said Branon. “We text a lot. People who know [about Marlie’s diagnosis] are sympathetic, but no one understands quite like another parent going through the same issues.”
Health issues can vary for girls with Turner Syndrome, and Madison’s have been more involved than Marlie’s. In her 9 short years, she has faced more than 20 surgeries to improve her vision, cleft palate, mouth and dental issues, and orthopedic issues, particularly with her knees.
“It’s nice to have someone to talk to when we receive bad news,” said Jessica. “As different as the girls are, we are so glad they have each other and we have each other.”
Branon remembers holding off on the decision to begin Marlie on growth hormones, partly out of Marlie’s avoidance of needles. She consulted with Jessica and let Marlie drive the decision. By second grade, Marlie was ready to pursue that option when she noticed all of her classmates entering growth spurts and she was not.
February, appropriately the shortest month of the year, is Turner Syndrome Awareness Month.
“But these two families are committed to Turner Syndrome awareness all year long,” said Lisa Davis, a nurse practitioner who co-directs Akron Children’s Turner Syndrome Center with Dr. Alicia Lowes. “Some girls might be considered petite and go undiagnosed until adolescence. They could be missing out on treatment, especially for serious issues like a congenital heart defect.”
In October, Branon and Jessica, with Jessica’s friend Brittany Mowrer, organized “Chasing Butterflies: A Walk for Turner Syndrome” at the Secrest Arboretum in Wooster.
The event, which also featured food vendors, face painting and family activities, had 500 participants and raised more than $10,000 for the Turner Syndrome Society of the United States.
Although bonded by their shared diagnosis, Marlie and Madison also strive to be “typical” third grade girls. They are not in the same classroom but meet up at recess, and get together for play dates as time permits. They share a love of the Netflix shows “Miraculous: Tales of Ladybug & Cat,” about a teenage girl who leads a double life as a crime-fighting superhero, and “Alexis & Katie,” who are lifelong best friends facing the challenges of high school together.
“I love Maddie’s sense of humor, and I make her laugh,” said Marlie.
“We have fun planning sleepovers,” added Madison.
The support system that both the girls and their mothers have can make all the difference when facing the challenges that come with a diagnosis like Turner Syndrome, said Davis.
“Marlie and Madison, as well as their families, are so blessed to have each other,” said Davis. “The two of them are instantly drawn to one another when they are in a crowded area, immediately joining hands and walking side by side as if they were meant to be together – to be each other’s butterfly sister for life. Many of our families and young ladies have never met another with Turner Syndrome until they attend our Turner Learning Community appointment, so what they have is so amazingly special.”
Akron Children’s has approximately 100 patients in its Turner Syndrome Center, which began in 2008. The oldest patient in the program is 35.
Davis and Dr. Lowes direct the patient care in the hospital’s Division of Diabetes and Endocrinology with two nurses and a social worker, and the team coordinates care with a number of other providers, as needed, including cardiologists, GI specialists, ophthalmologists, orthopedic surgeons, a geneticist, nephrologists, and a psychologist.
In addition to the multi-disciplinary care, the hospital brings in speakers and hosts an annual conference.
Davis notes that even though Akron Children’s is a pediatric hospital, Dr. Ashish Saini, a pediatric cardiologist who is also board-certified in adult congenital heart disease, will continue to see his Turner Syndrome patients into adulthood.
Both Branon and Jessica stay on top of the latest information on Turner Syndrome, and want their girls to find the proper balance in being aware of their special health concern without letting it define them.
“I wouldn’t change anything about her,” Branon said of Marlie. “When we first heard about her diagnosis [while still pregnant], we didn’t think she would survive. She is just awesome. I love being her mom.”
Jessica echoed her friend’s thoughts.
“We like to travel and have lots of experiences [with Maddie],” she said. “She – we – may have been through a lot but we get stronger because of it. I don’t know what I would do without her.”