Jacob + Brandon
You can see by the smiling faces in their photo, Jacob and Brandon are cared for by a proud and loving mom! The brothers have Duchenne’s Muscular Dystrophy and need assistance with most daily living tasks. A Hoyer lift would make it easier and safer for their mom to transfer them, but it is not covered by insurance. It is hard enough caring full-time for two young men, Variety wanted to lessen that load and make their environment safer. Variety donors, you have “lifted” this family! Join us in helping more….www.varietykc.org.
Little Harlie uses an Accent 1000 communication device and she loves it! For the first time, she can communicate what she wants or needs. The device has a robot voice and a Vocal ID voice would actually give her a personalized voice. This would help teachers identify who is speaking, it would help in social situations because she would have a unique voice like other kids….and best of all, her parents would hear her say “mom,” “dad,” and “I love you” in a voice that would truly be Harlie. For a family overwhelmed with the expenses of raising a child with special needs, the Vocal ID is not something they can do right now – but Variety donors can, and did! That’s because Variety believes every kid should Be Active, Be Social, and Belong. Harlie’s new voice will help her belong. Won’t you help other kiddos like Harlie? Visit www.varietykc.org.
Twelve-year-old Zack is wheelchair dependent and nearly the same size as his single parent mother, his sole caregiver. His list of conditions and surgeries is long and you would wonder how he remains so happy and positive! His spinal surgery last August makes a power wheelchair necessary, but the family has no way to transport Zack safely in his chair. As a result, he has been housebound for nearly a year…all for lack of a Van Ramp. When Variety partners heard that, they opened their hearts and check books – and now Zack will have the ramp he so badly needs to get out and interact with his community again. Please help us to help other children like Zack, visit www.varietykc.org.
Benjamin is an explorer! Going on four, he is eager to be out and about, exploring his world and learning all he can. Diagnosed with Cerebral Palsy and Dystonia, Benjamin needs AFO Braces to support him as he navigates his world. A Variety KC’s Kids on the Go grant will ensure that Benjamin continues on his adventures, gets the beneficial physical activity he needs, and has a way to get out and interact with friends. Help us make this possible for all kids with special needs, visit www.varietykc.org.
Jake is a resourceful young man that communicates by taking someone over to an item he wants or needs. Jake uses an iPad at school, with core words like “I want” or “yes and no.” There are also words relevant to his life and surroundings like “lounge” and “sour patch kids.” He is picking up vocabulary rapidly and having an iPad at home would help his overall progress and lessen the difficulty in communication. Variety supporters made an iPad possible for Jake – and earned a giant “Thank You!” Just a simple tool stands between a non-verbal child and a voice, won’t you help us help more kids like Jake? Email us at email@example.com.
Put yourself in six-year-old Xavier’s shoes. As a toddler he did not speak as much as his sister, but he was verbal. At age three that stopped. It took time for an Autism diagnosis and he lost out on some early therapy, but he is working hard each day. His frustration sometimes leads to aggression, understandably so. With an iPad and apps, Xavier will have a way to communicate again. Variety donors provided him with the tools he needed to find his “voice.” Can there be any greater gift? Please join us in helping Variety kids like Xavier! Visit www.varietykc.org.
Carly squeezes the most out of life. On the severe side of the autism spectrum, she needs help with daily care and is mostly non-verbal – she is also unstoppable! Carly likes swimming, inline skating, taking walks and investigating her world. Last year her father passed away unexpectedly, making some expenses beyond reach. Variety learned that active Carly was enjoying the large adaptive bike at school and knew that having one at home would give her not only enjoyment, but important physical activity. So here you go Carly! You are off to the races with a bike of your own, thanks to generous Variety partners. Join us in making sure every kid has a chance to Be Active, Be Social, and Belong! www.varietykc.org.
Hi, My name is Katie Ireland and this is my daughter Charlotte. Charlotte falls into the category of special needs although we still lack an official diagnosis. The last two years have been full of painful genetic blood tests, an MRI, an EKG, an EEG, an EMG and a muscle biopsy – all without official results. All we really know is that she has severe low muscle tone and global developmental delays.
The last two years have also been jam-packed with therapy and doctors’ appointments and even a therapeutic preschool. It has been rough. With very few silver linings.
One positive change we have had in our family is adding a baby brother for Charlotte. He is now 1 and is a ball of energy and shows no signs of whatever is causing our Charlotte to be delayed. As Max has grown, my husband and I really started noticing how little Charlotte is able to do with her brother and her peers. It has seemed like almost every toy and almost every park was made with only average needs kids in mind. We were beginning to be feel depressed and closed off.
But something amazing happened. Our physical therapist at her preschool told us about the Go Baby Go! cars and she suggested we apply. Honestly I thought it was a long shot. But clearly, I did not know Variety yet. I filled out the application and a few weeks later I received a phone call from Deborah. And when I say she was excited to share the good news, that is a big understatement. She was ecstatic to be able to give our little family such an incredible gift and her excitement was felt tenfold in my husband and I. They, Variety Club and Rockhurst were going to personally adapt a car for our Charlotte. She was INCLUDED!! And not just her – 19 other toddlers were going to feel the same inclusion.
A couple weeks later, we attended the Variety Club Halloween Party, and from that moment on I knew that we had found our silver lining! The next weekend was the build and we experienced pure pride as we watched our little “developmentally delayed” child drive that car with ease. And the smile on her face was worth the 2 years of tests and therapies and unknowns. Not only that, we were able to deliver a go baby go car to Charlotte’s best friend Mason who is also severely low tone but had a benefit in his honor on the day of the build. It was incredible. His parents and my husband and I were in tears at the gifts we had been given.
Although my husband isn’t here today, I know he would join me in saying a BIG THANK YOU to all of you that contribute to Variety. YOU make inclusion happen for our children and you make life a whole lot happier for the children and their parents. Thank you!!
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.