Tatum’s mother, Lisa Ridgely, said she is well-loved by her classmates and teachers.
But Tatum is not exactly like the other kids in her class. When she was born, doctors soon discovered she had a genetic defect called Williams syndrome — a defect that affects one in every 20,000 babies born in the United States, according to Dr. Ken Rosenbaum, on staff at Children’s National Medical Center in Washington, D.C. This means Tatum struggles with severe speech delays as well as physical developmental delays.
The side effects of Tatum’s Williams syndrome are why, in October, a limousine drove through Urbana and stopped in front of the Ridgely residence. Tatum was receiving her wish.
“We went to a gala in New York last year for Williams syndrome, and one of my sister’s friends said Tatum qualifies for a Make-A-Wish Trip because of the heart condition that comes along with her Williams syndrome,” Lisa Ridgely said.
When asked by the Make-a-Wish Foundation what she wanted to do, Tatum responded, “I want to go to Mickey Mouse’s House!!”
Ridgely laughs, adding that Make-a-Wish Foundation made it happen. The limousine was just part of their experience — from Oct. 3 to 9, Ridgely and her husband, Chris, and 8-year-old Emma accompanied Tatum to Disney World for the week, and were treated to a grand experience.
“I will never go to Disney World and see it the way Tatum did this time. They had all these special things they did for the kids,” Ridgely said. “She didn’t have to wait in lines. They give you spending money. A limousine picked us up from our house and brought us back from the airport!”
As part of the developmental delays that come along with Williams syndrome, Tatum, who will be 6 next month, does not ask for much of anything. But Tatum has been asking for one thing — a carousel horse like she rode during her time at Disney World to put in their Urbana home. And that’s just what Ridgely was able to find for Tatum for her Christmas present.
To help with her developmental and physical delays, Tatum has received physical, speech and occupational therapy since she was 12 weeks old. Therapists from the Frederick County Public School system come to Centerville and work with Tatum on a regular basis.
“There is no medicine to not make someone have Williams syndrome,” said Rosenbaum, the founding chairman of the Division of Genetics and Metabolism at Children’s National Medical Center. “Most of the treatments are getting therapy quickly.”
In addition to therapy, Williams syndrome patients aren’t treated for the condition. Rather they are treated for the physical side effects caused by it, Rosenbaum said. Common physical side effects include heart issues. Between 50 and 60 percent of Williams syndrome patients have congenital heart disease, he said.
A heart condition is frequently how Williams syndrome patients are diagnosed — including Tatum.
“We found out when she was 6 weeks old. She had a heart problem and thinking it was a coarc, the doctors went in to fix it. They discovered it was not a coarc but instead her entire descending aorta was abnormally small,” said Ridgely, who works as a loan processor at Apex Home Loans. “Today, it still is not growing fast enough to support her growing body.”
Coarc is short for coarctation of the aorta, a narrowing of the aorta, the large blood vessel that branches off your heart and delivers oxygen-rich blood to your body, according to MayoClinic.com.
Ridgely said she received a phone call about six weeks after Tatum’s birth from Tatum’s doctor, who broke the news to her. That day, Dr. Rosenbaum stepped into the Ridgely’s life, as well. When Rosenbaum talks to families who have just heard the diagnosis, he said he always affirms to them that Williams syndrome is a genetic disorder that occurs before conception.
“Williams syndrome is not brought about by anything anyone has done,” Rosenbaum said. “It happens before than conception. It is a deletion in a series of genes on chromosome seven.”
Rosenbaum has treated about 200 Williams syndrome patients and said that the condition affects each child very differently. Patients are at all different places on the spectrum from mental retardation to developmental challenges that are improved with therapy.
Common with Williams syndrome patients, Rosenbaum said, is a verbal strength. At times, some Williams syndrome patients can have behavioral issues similar to autism patients, he added. Ridgely said this is not the case with Tatum.
Thankfully, Rosenbaum said, the life span of patients with Williams syndrome is pretty normal. The biggest issue as far as life expectancy is their cardiac condition.
“Kids don’t die because they have Williams syndrome,” Ridgely said. “They will die from complications that Williams syndrome causes [in] other parts of their body. The heart problem that Tatum has could be very detrimental in the future.”
While Ridgely said she is fairly confident Tatum will live with her and Chris for the rest of their lives, Rosenbaum said he has seen Williams syndrome patients do incredibly well, and some of his patients currently are employed at places such as National Institute of Health.
Her future may have several possibilities, but there are other possible complications now. In mid December, Tatum had her first seizure. To find out what caused it, she will undergo tests at Johns Hopkins University in the first week of January.
“The seizure was the first, and we don’t have much info. as to why,” Ridgely said. “I am just keeping my fingers crossed that it was a isolated situation.”
Ridgely said two things have been a real comfort to her and her family during this difficult time — blogging and the community of Williams syndrome parents.
“I blogged for a good three years. That was how I kind of got through things. It made it easier for my parents and relatives to stay informed about what was going on without having to tell each person and talk about it all the time,” she said.
And it was on Facebook that she met a large community of Williams syndrome parents. There is even another child in the Frederick area who has Williams syndrome, Ridgely adds. She began attending events with the Williams Syndrome Association and is now the Mid-Atlantic regional chair for the Williams Syndrome Association, facilitating activities and more.
This support has given Ridgely “a sense of community and family and knowing that you are not alone. It takes your life and puts your perspective in a whole different order. Little things that seemed so big five years ago aren’t big anymore,” she said.
She added their family has learned to move to a new normal and work past the difficulties.
“I guess move past it so that [while] my daughter has Williams syndrome, Williams syndrome doesn’t have her. It doesn’t control our family,” she said. “It brings you closer as a family, but it is hard.”
