May 10, 2022 | Communication
Sean is a 7-year-old boy living with his mother and two brothers. He is a domestic abuse survivor who has spent time in foster care as his mom became homeless trying to leave an abusive home. He has been diagnosed with: Intellectual Disability, Parechovirus Type 3 Encephalitis, Dysphasia, Phimosis, Cortical Visual Impairment, Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder, Seizure Disorder, Post-Traumatic Stress Disorder, Global Developmental Delay, Speech and Language Disorder, Fine Motor Development Delay, and Failure to Thrive (2021)
And he is a survivor! Since being reunited with his mother, he has had access to IDD waiver services and his mom has worked to get him into a new school and therapies. Sean for the most part is nonverbal, a communication device would help him have better communications with family and those working with him. And a little more about Sean – he is very attached to his mother and caregivers with whom he has bonded with. He is shy and timid. He mimics behaviors of those around him, which isn’t always the best, but mom is working on that. Sean has a service dog Daisy Mae who is being trained to detect seizures. Sean’s mom Katie hopes that one day Daisy Mae will be able to attend school and be out in the community with him.
To help mom and his teachers and therapists, Variety KC has made sure Sean gets the communication device he needs! We know that lack of communication leads to frustration, acting out, and lack of progress at school. There are so many kids like Sean who could benefit from a communication device, help Variety KC to give every child a voice by donating to www.varietykc.org/donate Thank you!
Feb 24, 2022 | Communication
Archer is one of the goofiest and smartest kids you will ever meet. His favorite thing in the world is books! Archer usually does not leave the house without at least 20+ pounds of books in tow. He is constantly studying anything he can get his hands on!
Archer has always been “the big kid” and was almost 10 pounds at birth. I still remember and tell friends and family about how the nurses lined up to see “the big baby.” Archer crawled at 6 months and was walking at 13 months. Archer got an evaluation performed at the University of Kansas hospital right after his second birthday because mom and dad were not seeing the normal eye contact, babbling of sounds or imitation like most babies show. He is now a 7-year-old boy who was diagnosed with Autism. He has a mixed expressive-receptive language disorder, and severe Speech Sound Disorder. This makes it hard for Archer to communicate his needs on a daily basis. His medical diagnosis is Autism Spectrum Disorder, 84.0.
Archer is a very active and currently is using a loaner device to communicate because his iPad broke and the 3 year warranty that was purchased for protection had just lapsed. Archer has been enrolled at KidsTLC and has been receiving Occupational and Speech therapy 5 days a week since November of 2017, right before his third birthday. Archer is currently used to using a device we are paying for and uses it as his primary communication although he sometimes will use sign language if it’s for “help” or “more.”
This equipment is necessary for Archer’s quality of life as he has severe autism and has a very wide vocabulary, with the right equipment he knows how to use that vocabulary very well. Getting the correct equipment into the hands of Variety KC Kids is the same as giving our kids a voice. Can you imagine not being able to communicate what you want or what you need? Help us to give every child a voice, donate today at www.varietykc.org/donate
Jan 19, 2022 | Communication
These siblings were born with congenital hearing loss and currently use hearing aids. They are both accomplished students and active in scouting. Annelise is in swimming lessons and plays basketball, her brother Jude is learning to swim and loves to build things. His goal in life – possibly a NASA engineer or an inventor who works on a way to give vaccines without any pain. Hearing aids have a limited life span, but they also have made tremendous technological improvements in recent years. In particular, being able to connect via Bluetooth would mean that Annelise would have less problems getting connected at school and Jude would be able to listen to classwork directly through his hearing aids. Currently he has to use headphones, but the headphones don’t work with his hearing aids.
Hearing devices can mean being included or being left out. Variety supporters believe that no child should be left out due to the lack of equipment. Help us break down the barriers and allow kids like Jude and Annelise to Be Active, Be Social, and Belong. Donate today at www.varietykc.org/donate. Thank you!
Jan 19, 2022 | Communication, Donate, Inclusion
| This is the story of a fighter, written by his parents – his champions:
Jack was diagnosed at 20 weeks gestation with a critical heart defect. We were told he may not survive the pregnancy and if he did the likelihood of survival after delivery was unlikely. We traveled to St Louis where a team of doctors were willing to help give Jack a fighting chance at living. Jack was born at St. Louis Children’s Hospital on January 16th, 2018. He came out crying and we knew then he would be a fighter. His heart defect had damaged his lungs and his only option of living outside of the hospital was a heart and double lung transplant. At 4 months of age Jack received his second chance of life and on May 24th, 2018 he received his transplant making him the first infant heart-double lung transplant in the country in over 10 years. On August 1st, 2018 Jack was finally discharged home. Our dreams of bringing him home had become reality.
Jack will be four soon and loves playing outside, jumping on furniture, playing with his siblings and watching football to name just a few of his favorite things. He suffers from a paralyzed vocal cord and diaphragm secondary to his transplant. This makes vocalizing sounds very difficult for him. We use basic sign language to communicate with him but we know he has more to say. We want Jack to be able to express himself and tell us exactly what he needs/wants without getting frustrated. A communication device will allow Jack to communicate so much better at school and home. As his parents, we know he has lots to say and we feel we owe it to him to help him in any way we can. We want him to feel heard and understood, not just by us, but by others around him too.
Now it is your chance to be another of Jack’s champions! Donate today and give Jack the voice he needs through assistive technology – www.varietykc.org/donate
Thank you! |
Nov 2, 2020 | Assistive Technology, Communication, Inclusion
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!
Jul 20, 2020 | Announcements, Communication
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!
