Franklin’s mom shares the first three years of her sweet son’s life:
“My kind affectionate son had an interesting first two years of life. Just a few months old, he was diagnosed with Cutaneous Mastocytosis a rare skin disease with clusters of allergy cells on the surface of his skin. He has approximately 20 clusters. Around 6 months of age we began to introduce foods starting with baby cereal, and he threw up until it was blood. He was then diagnosed with FPIES and had to be on a grain free diet. By 16 months he was receiving MO First Steps speech therapy, occupational therapy, and feeding therapy. At 26 months old, MO First Steps began providing ABA therapy. Franklin finally began to make progress in therapy and our incredible ABA provider recommended Ability KC for an ACC device fitting. My son understands direction and attempts to communicate through nonverbal cues, screeching, minimal sign language, and has less then 10 unprompted words. A communication device with the program touch chat would be giving a voice to my son. This would empower him to ask for what he wants, to consent to activities, to tell us what hurts when he is in pain, and to simply tell us what’s on his mind. In November, my son turns three and will start special education preschool and a device now would assist in his learning at school.”
It’s hard to imagine all that Franklin’s family has gone through in just three years, and what incredible gains! Variety KC donors know just how important the proper tools are in helping kids to keep moving forward and Franklin is getting his device and apps. There are so many young kids who would benefit from their own communication device, you can help Variety KC give them a voice – donate today at varietykc.org/donate. Thank you!
Hy-Vee Golf Tournament at Shoal Creek Golf Course is Canceled due to COVID-19 Safety Precautions
We are sorry to announce the Hy-Vee Golf Scramble for Variety KC will not take place next month.
Variety applauds Hy-Vee for making the health of our golfers and volunteers the most important factor in this decision! You truly are community leaders.
We are grateful for some of the generous participants who were able to donate their sponsorships and auction items even upon hearing the event was canceled. You were in it for the right reasons – playing for the kids!
COVID-19 has impacted so many people and organizations. We lost our biggest fundraiser (The Variety Show) in April. This golf tournament is our second largest fundraiser. Once again, we find ourselves asking our individual donors and partners for help. Our list of children needing help has grown during this challenging time, while our potential for funding has fallen.
If you are financially able to help us achieve our mission to help KC Kids, it would be so appreciated. Donations can be made HERE.
We leave you with this quote from Bobby Jones – “Golf is the closest game to the game we call life. You get bad breaks from good shots, you get good breaks from bad shots – but you have to play the ball where it lies.”
That’s exactly what we will do – continue to do whatever we can to make sure all area kids have the chance to Be Active, Be Social, Be Safe, and Belong.
Stay well and be safe!
Wilson “Wil” was born in the Commonwealth of the Northern Mariana Islands, in the village of Garapan. He was adopted in 2013 and his mother, Kim, moved with him to Kansas in 2018 to be closer to her family. (Welcome to KC Wil!) Wil’s therapist wrote to us and in her letter, she builds such a strong case for why every child NEEDS a way to communicate!
“Wil is lovable, funny, and social. He is a very caring friend to his classmates, greets his peers, and has concerns for his peers. He really likes being a “helper.” His diagnosis of Apraxia makes it difficult for him to form social relationships with his peers because his communication is a barrier. Wil is very athletic and active, which requires a lot of supervision in the home setting. Due to Wil’s communication difficulties, he must always have supervision because he would not be able to communicate any sort of abuse, neglect, or exploitation. By having an AAC device, this would increase Wil’s independence, self-advocacy, and social relationships for his future. He is responding to the use of an AAC device at school, but this is not a dedicated device that he owns and is able to take home with him — which is like taking his voice away from him when he leaves school. With his dedicated therapists and school team, in addition to his supportive mother, Wil could grow his communication skills exponentially before leaving the elementary school setting and build strong social relationships with peers prior to entering middle school and high school. This device would change his life!”
Variety KC’s generous partners understand the importance of communication. These partners, along with Wil’s insurance provider – BCBS – will make sure Wil gets his “voice,” but there are so many more kids in need. Help us to help all these kids, especially during this “stay at home” time. Donate today by clicking HERE – and thank you for joining our #InclusionRevolution!
Kye is a sweet little boy who is also a fighter! He was prenatally diagnosed with a heart condition (hypoplastic left heart syndrome). After birth, he had a stroke. In spite of all of his diagnoses, he is pleasant and a go-getter. He has received therapy since he was three months old and it’s suspected Kye has apraxia of speech, which limits his ability to motor plan in order to produce speech.
Because he can’t communicate his needs, Kye will whine and cry from the frustration.
In the area of speech and expressive language, Kye’s verbal communication skills are significantly limited, and he is primarily non-verbal at this time. He has some occasional “pop out” words, but he does not typically use verbal skills as a means to communicate his wants, needs or thoughts. Kye is beginning to communicate through non-verbal means such as taking the therapist to what he wants or by making choices with the use of pictures of objects. The therapists have introduced Proloquo2go (P2G) on an iPad from Marian Hope Center that is used during his therapy sessions. Kye demonstrates an understanding of how to use P2G. With some assistance and when motivated, he is beginning to be able to scan the page and find the corresponding picture. Kye uses P2G to work on labeling pictures and objects as well as to make requests. It should be noted that Kye’s receptive language skills appear to be higher than his expressive language, but are also limited, when compared to same age peers.
The gift of a communication device would greatly assist his communication efforts. Although he is young, he has had experience communicating with an ipad using Proloquo2go and has had good success. His family says it would be an absolute blessing for him to have his own iPad to communicate in all of his environments.
Variety KC hears this story from about so many kids. Right now, while quarantined at home, the frustration from communication struggles is especially hard for kids and families. Variety donors are helping Kye, but we have so many more on the list. If you can help, please donate at www.varietykc.org/donate