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.
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.
Ma’Liyah is a toddler affectionately called “Liyah” by her family. She is a people person who lights up when meeting others. She loves her family, her toys and cartoons (especially Doc McStuffins!). With spinal muscular atrophy (SMA), Liyah is unable to stand by herself. Her world is seen from sitting or laying down and observing others. A medical stander would allow Liyah to experience the world from the same perspective of her peers. It is important for kids with special needs to be around other kids, so that they recognize and understand they are just as important. Variety partners, volunteers and donors know that – and that is why they have made it possible for Liyah to have her stander.
You can help kiddos like Liyah too! Visit www.varietykc.org to find out how.
Variety KC was proud to nominate longtime Variety supporter Jill DeBok for the Presidential Citation. Her dedication is an amazing example of how, through engagement, a one-time volunteer can grow to become an important contributor and asset. For more than a decade, Jill has supported Tent 8, and has been a board member and volunteer for more than eight years, serving as board President in 2014.
Jill works for Pepsi America. She was first introduced to Variety through her client and Variety supporter Nancy Pagel, of the HyVee grocery stores. Initially, Jill was involved by providing donations, volunteering and attending events with Nancy, but Jill’s involvement grew over the years to include the board’s presidency.
As the mother of a very active girl, Jill feels deeply for Variety Kids and their families. Her commitment has never wavered – not as she went back to school to pursue her masters, and not with increased responsibilities at work. She also encourages her daughter to volunteer at events, raise funds and assist with starting Teen Variety KC.
Jill’s enthusiasm for Variety’s mission is demonstrated in the way she involves others. Working for a company that partners with major community events and organizations, Jill has opened many doors and exposed so many new partners, donors and volunteers to Variety. Being able to spread the Variety story is important for Jill, and through her, Tent 8 has been able to have messages displayed on the back of highly visible Pepsi trucks and at professional sports venues. Her influence doesn’t end at the Kansas/Missouri state lines; she shares her experiences with co-workers in other markets, encouraging them to seek out Variety tents in their own communities. Jill takes every opportunity to apply for community grants from Pepsi, recruit volunteers, provide products for numerous large scale events, and secure large corporate sponsorship for Variety fundraisers.
Her skill set and background includes the development of talent and leadership. Nowhere is that more evident than on the Variety Board of Directors. It was under her board involvement and leadership that Tent 8 saw some of its most successful years of growth and created a seven year strategic plan for sustainability. Even after stepping down from the presidency, Jill remains more passionate than ever, mentoring new members and engaging new volunteers.
From donating soda, to donating time, to more than a decade of generously giving of her time and resources – Jill DeBok is the very definition of a Variety supporter. She explains it herself by saying, “it starts when you meet your first Variety Kid and see the life-changing impact that an adaptive bike or stander can make. And you want to see more of that…more smiling children, more parents with a bit of relief on their faces. For me, that was a bit of a honeymoon phase. After really getting involved with Variety, you realize these success stories don’t just happen. It takes work, it takes resources. For me, doing what it takes to make more of these happy endings happen – that is the greatest reward of all.”
It is for tremendous attitude and her contagious leadership style that Jill DeBok received the Variety International Presidential Citation Award.
See how you can get involved with Variety, too by visiting www.varietykc.org.
Jonathan is bright little boy with Down syndrome. Through his iPad, he learned his shapes, colors and even some reading. Most importantly for children with Down’s, he had apps to help with memory skills. Then his iPad broke and his single stay at home mom could not afford to replace it. But generous Variety donors could, and they did! And now Jonathan is back to eagerly learning and advancing again.
Help other children like Jonathan by visiting www.varietykc.org.
Variety works with partner organizations all over our area. As the newest initiative of the CLO Children’s Network, North Star Academy Community Living provides on-site services for individuals ages 5 to 22 with intellectual or developmental disabilities, aiming to “improve the quality of intervention services and enrich the lives of our students.”
North Star Academy Community Living reached out for help in acquiring an adaptive bicycle. This bike would be used as a way for the individuals they serve to exercise and gain strength.
One gift, touching many lives. Variety is proud to be a good steward of our donor’s gifts, maximizing every dollar spent and spending less than ten percent on administrative costs. As a volunteer organization with just one full-time paid employee, we make sure the money you give gets to the children you want to help. Want to know more? www.varietykc.org.
What would you do if you received a letter about a little boy named Christopher, who is both non-verbal and non-mobile, but can’t be in the social situations he craves because of transportation issues? Well, if you are Variety KC, blessed with wonderful donors and partners, you would secure an accessible van for Christopher so he could get all the joy he can out of his inclusion in activities and gatherings outside the home.
Find out about other young lives you can affect at www.varietykc.org.
Can you imagine if you were thirsty or in pain and could not tell someone? Could not get help or relief? The daily frustration of being or having a non-verbal child can be very stressful. And it is a quick fix! Ten-year-old Kylee just needs an $80 app to help her communicate – but $80 to a single mother of two might as well be eight thousand. Variety’s generous supporters get that! And they made sure Kylee got that app, and with it, the ability to communicate with her mother, brother and caregivers. The happiness app…because that’s what it brought to Kylee’s life!
Learn more about chances to bring happiness into the lives of kids at www.varietykc.org