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.”
When it comes to covering not-for-profits, not all media is created equal. Some outlets will promote the charity, but sell that exposure (“brought to you by…”). Other media outlets hold awards, and then charge for the trophy or for attendance at the presentation event. Variety KC understands the need to increase the bottom line, but at the same time, is appreciative when that “unicorn” of a media outlet truly dedicates itself to supporting community causes.
The Independent, Kansas City’s Journal of Society since 1899, is that “unicorn” – a different kind of media. That is clear just by reading publisher Laurie Ingram’s biography – “Publishing a magazine, consulting with non-profit organizations, cheering on kids at events and re-painting another room at her house, much to the chagrin of her husband Chip.”
The Independent is the go-to publication when it comes to promoting events. Their highly pictorial coverage of events is wildly popular and compelling to readers. Variety KC has been fortunate to have our events promoted by The Independent, and we credit the success of these events to their generous media space and coverage. Throughout the year, The Independent has supported Variety KC’s annual fundraiser The Variety Show, the 5K run, golf tournament, inclusion opportunities, and exposure for numerous smaller events, as well as Variety volunteer recognition. The publishers have also encouraged their own kids (Charlie – photo attached) to volunteer by hanging our Variety KC handicapped signs at local businesses, saving us hundreds of dollars and time.
It doesn’t end there. The Independent actively solicits not-for-profit honorees, offering multiple opportunities to showcase not-for-profit leaders and causes. Variety KC Executive Director Deborah Wiebrecht is the recent recipient of one such honor. When a century old influential publication like The Independent gives this type of endorsement and attention, it provides an enormous amount of credibility. It is hard to put a dollar amount on that type of support.
Media plays a key role in both the awareness of Variety’s mission and the top-of-mind exposure that helps in securing sponsorships, donors, and volunteers. When that media acts out of true selflessness, its role warrants recognition. We hope The Independent is proud to have won the International Media Award this year.
Five-year-old Lydia is mostly non-verbal. Diagnosed on the Autism spectrum with global developmental delays, Lydia communicates using a couple words or partial words. As Lydia grows, her need to communicate grows with her. At age 5, she is greatly in need of special apps and an iPad. It is absolutely amazing how children like Lydia respond and learn through technology like this.
Variety donors and partners understand the world this technology opens up for kids like Lydia and are making sure she gets what she needs. Find out how you can join Variety’s supporters to help more children “speak” – visit www.varietykc.org.