The Self-Bentley family of Perrysburg has had years of experience learning and coping with Williams Syndrome, and now they will bring their experience to a national audience. Their son Alex has become one of the most highly functioning children in his age group with the genetic disorder. “People say it takes a village to raise a child, well it’s taken several villages to raise Alex,” said Michelle Self, Alex’s mother. “We’ve had such great help from doctors, therapists, teachers and the community. It’s had such a beneficial affect on how well he functions and what he’s learned to be acceptable behavior,” she said. “He’s been treated like everyone else, so he knows better,” she said. “He understands fractions, reads his textbooks and takes part in all sorts of activities,” she stated.
Williams Syndrome is a genetic condition that affects one in 10,000 people. The disorder is a microsomal deletion of chromosome seven, meaning individuals with Williams Syndrome are missing 20-25 genes. Children and adults with Williams Sydrome are social, compassionate and loving. Although there are many positives, ongoing medical issues such as cardiovascular disease, learning disabilities and developmental delays can be experienced.
National awareness of WS has continued to grow over the years. National Public Radio (NPR) has done several broadcasts on the symptoms WS children face. WS children are known to be hyper-social, interested in everyone, and as a result have often been taught to be distant, to protect themselves. It was upon hearing these broadcasts that producers of the acclaimed ABC news program 20/20 decided to feature children with WS on a episode of the show. Self was contact by the executive director of the Williams Syndrome Association in Troy, Michigan. “She called and asked if our family would be interested in participating,” said Self. “We sent in our information and then didn’t hear back.” Several weeks later 20/20 producers called Self and asked several follow up questions regarding Alex’s routine, activities and schooling.
“They wondered about his speech,” said Self. In July of 2009, Alex underwent a procedure to place two stents in the narrowed arteries of his heart. During the operation, he suffered a stroke from a blood clot on his left side, which affected the right side of his body. Alex’s speech, fine motor skills and walking abilities were affected, however, they are now much improved, if not entirely better. The producers asked if the family would attend a national conference in St. Louis. They were indeed planning to go, but it was not until four days prior to the event, that producers asked to catch parts of their visit on camera. “I was giving a speech and they filmed a bit of that, then Alex went to music camp and Chris Cuomo, a 20/20 news anchor, showed up,” said Self. Cuomo spent time with the campers and even interviewed Self.
Months later, producers called and asked the family for permission to film an entire day at their home. “They were here from 6:30am to 6:30pm,” said Self. The film crew captured Alex’s trip to school, his visit to the orthodontist, a piano lesson and more. “Producers interviewed some of his former teachers,” said Self. 20/20 cameras did not capture what they had expected from a child with WS. While Alex is social, the hyper-social aspects of the disorder were not as prevalent in him as expected.
Alex is not the only child to be featured on the program; two or three others will also be interviewed. While the family was filmed this past September, they still are unaware of when the episode will air. “Even the producers only know four days in advance,” said Self. “I emailed with an inquiry and was told editing on the episode was about to begin, so we hope it will be soon, but assume it’s about a month or two away,” she said.