Bearing a contagious smile, Alex hurried towards his mom, Jessica, waiting with open arms on a bench at our live Wishlist Radiothon event. Alex and his happy demeanor in no way betrayed the immense challenges he has overcome in his 7 years and in his daily fight. “We were diagnosed at about 36 hours at Children’s Mercy with Mowat-Wilson syndrome, which nobody’s really heard of,” said Jessica. “He had a really rough first month of life, and he’s been fighting ever since.”
In individuals with Mowat-Wilson syndrome, a rare genetic condition, everything produced after a certain gene code stops forming in utero. As one result, Alex has agenesis of the corpus callosum (ACC), meaning that the band of nerve fibers that connects the left and right sides of his brain developed abnormally. “Processing is really slow for him,” explained Jessica. For most of us, when we need something, we can just reach and pick it up; simple actions feel almost automatic to us. For Alex, “he needs to think about it, then decide what he needs to get it, and then he has to make that arm or leg go there. I always think about how long it takes him to make a decision. It’s pretty impressive,” she continued. Alex was also born with Hirschsprung’s disease, an atrial septal defect in his heart, hypospadias and hydronephrosis of his kidney. “He’s had surgery to fix everything we can, and he just fights for the rest.”
“He’s pretty special,” said Jessica, describing the progress Alex has made so far. “He’s learning how to talk on an iPad, he’s learning how to walk independently, and if I could get him to eat without throwing food on the floor, it’d be amazing,” she said, smiling at her son. Alex uses an iPad with the ProLoQuo app provided by his school district to communicate with his family and teachers. The ProLoQuo software has pre-programmed phrases, such as “I want”. Then, Alex can choose from any number of cards; cards include actions (“play outside”, “swing”) or objects (“cookie”, “orange juice”). The program can be personalized by inputting photos of family members, teachers, and classmates for more complex relational sentences. After choosing a card, Alex can hit a button that prompts the app to say the phrase out loud (“I want to play outside”, for example). “That’s kind of where we’re stuck at school. He wants to touch every single button, so now we have to learn how to make it make sense,” explained Jessica, watching Alex enthusiastically tap all the cards on the screen.
“He’s highly motivated by electronics. It’s a pretty neat program…it’s also $300.” The cost of an iPad combined with the $300 ProLoQuo software represents a sizeable cost. Before using an iPad, Alex learned to communicate using laminated paper cards. “He would pick the right card, but instead of giving it to the speech teacher, he would just try to eat it.” Alex broke the iPad he originally had at home, and Variety provided a tricycle for him last year, so Jessica hopes to apply for an iPad next year through Variety. You can help us provide more gifts of communication and mobility by visiting www.varietykc.org.
Listening to Alex’s story, Jessica’s strength and determination can be clearly seen. The purple in the tattoo on her left wrist serves as a much-needed reminder to sometimes take a moment to just breathe. She explained that the Chinese characters represent one of the Five Tenets of Tae Kwon Do, the indomitable spirit:
“Though broken a hundred times, I will not bend.”