Oct 10, 2023 | Meet the Kids
MEET JAMES!! 
James was diagnosed with Trisomy 21 through a blood test before he was born. He is extremely loved by his family and has an amazing personality that continues to make us smile and laugh. He was not expected to survive to birth but he overcame that and continues to defy expectations every year. He crawled and walked before he was predicted to be able to. We know that he will achieve anything he sets his mind to given the proper tools to help him reach his goals. He loves to act out the movie Frozen and dance to his favorite songs while playing with his younger sister Ellie.
He received services from the age of 4 months old that included speech, occupational therapy, and physical therapy. While we have made some progress on speech throughout the years he continues to only use a handful of verbal words and not conversationally. He was provided an iPad through school with the Touch chat application to communicate and he has learned it very quickly and is continuing to learn to use it to communicate to us in ways we never thought he would such as being able to say “I love you” to his family. While the school does provide him an iPad, it frequently gets left at school accidentally, or it does not get backed up and we lose everything we saved when the iPad breaks down or gets damaged at school. Having our own iPad will be incredibly so that we do not have any breaks in his ability to communicate with us and so that mom may be able to personalize his application to him during times when he is at school.
Donate today to be a part of the Inclusion Revolution!
Sep 14, 2023 | Meet the Kids
MEET HENDRIX!!
Hendrix is a former 26-week preemie who spent 478 days in the NICU at Children’s Mercy Hospital in Kansas City, MO. In September 2022, Hannah and Dillon Stieb found out that Hendrix needed a family and that as soon as 2 caregivers were trained, he would get to go home from the hospital. On November 28, 2022, Hendrix got to leave the hospital for the first time. Ever since he got to come home, Hendrix has made stride after stride; going from not being able to even sit up to now nearing walking only 8 months later. Hendrix has been a pro at working through Speech, Occupational, and Physical therapies weekly as he works to overcome the developmental delays that not only come with being severely premature but being a kiddo with a trach. On July 11, 2023, Hendrix was officially adopted by Hannah and Dillon, and sister Luna.
Hendrix is such an active boy. He is determined to walk and be active. The first time that Megan, the Physical Therapist at Ability KC placed Hendrix in the adaptive tricycle his eyes lit up. With all smiles, he took several trips around the facility and that would only be the beginning. It was noticed that Hendrix was working to try and pedal on his own, helping to strengthen his leg muscles and to coordinate movement to prepare him for walking. It was then that Hannah and Dillon knew what a benefit the tricycle would have, especially during family walks, over a stroller. An adaptive tricycle wouldn’t just be to help strengthen his legs and coordination, but it is something he thoroughly enjoys, and his parents would love to give him that experience at home too.
Donate today to be a part of the Inclusion Revolution!
Sep 7, 2023 | Meet the Kids
MEET ROMAN!!
Roman has a diagnosis of Spina Bifida and Hydrocephalus, but these diagnoses do not define this sweet 7-year-old boy!! Roman walks with crutches and wears AFOs (ankle-foot orthoses) and also uses a wheelchair for long distances. He currently has a Ventriculoperitoneal (VP) shunt to control his hydrocephalus.
Roman’s family started an incredible page for him @defyingodds_romansjourney to give other families in their situation HOPE. His parents shared, “When we got Roman’s diagnosis it felt like our world was closing in on us. We didn’t know what was in store for our baby boy but we knew we would do everything we could to make his life everything it could possibly be. After he was born, we quickly realized that he was more like a typical kid than not. Sure he has differences and he has to deal with things that most people don’t; however, Roman doesn’t let that define his life. He’s just a 7-year-old boy who loves sports – especially wheelchair basketball and Chiefs Football, monster trucks, and playing outside. He has the best outlook on life and always chooses to see the good in every situation.” Be sure to visit Roman’s page for inspiration, hope, and the cutest pictures and videos you’ve ever seen!
Roman loves to be outside and to play with his siblings! However, he is limited as to what all he can do outside with his mobility. Roman’s family recently applied for a therapeutic tricycle through Variety KC which would allow him to spend time outside doing things his brother and sister do. His parents share, “This would mean the world to him! This would also be such an amazing exercise for his legs and something that is actually fun for him. A couple weeks ago we went to the ability summit in Overland Park, Roman was able to try a Rifton tricycle. He immediately took off! It was the very first time he was able to ride a bike without someone pushing him. We’ve tried so many other bikes and have tried rigging bikes to help him be able to ride but he either couldn’t get the hang of it or didn’t feel stable enough to even want to try. With this bike he tried I didn’t even have to ask if he liked it because you could tell with his giggles and laugh that he was loving every second of it.”
It is so unfair that therapeutic bikes of this nature can cost between $2,000 – $5,000 depending upon the modifications needed to meet the needs of each individual child – AND bikes of this nature are rarely covered by insurance. Can you help us to raise $2,700 to give Roman this bike and the opportunity to play outside with his siblings and continue these giggles?! DONATE today to help Roman!!!
Now let’s go get this Chiefs-lovin boy a win tonight AND a new therapeutic tricycle!!!
Aug 11, 2023 | Meet the Kids
Hank Tierney is 6 years old and will be starting Kindergarten this year. He has Down Syndrome. He was adopted as a baby out of foster care. We got him as a foster child when he was 3 months old and adopted him when he was close to two years old. He has been a huge blessing to our family and has overcome so much. He was born with several health issues that resolved and/or grew out of. He has attended Britain Development since he was 18 months old.
He will be graduating from preschool there in July. He also attends Timothy Lutheran School in their preschool program. He will be starting Kindergarten there this August. As you know, private schools do not have the funding of public schools. A communication device would be much appreciated. We pay for private speech therapy and occupational services, but he still needs some further help with his communication. This would be very helpful for his new teacher and peers. I do get asked by kids because I teach there, “How do you know what he is saying.” I always tell them when you are around him enough you will understand too. It has been a blessing for a private school to allow him to attend and I want it to be the most enriching experience it can be so; he can be in a regular classroom with his peers that are his good friends. We have been so fortunate to receive a bike from you guys that we still use it to this day. It will be used and so appreciated.
If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate. Thank you!
Jul 10, 2023 | Meet the Kids
Tommy was diagnosed with autism spectrum disorder at 26 months old. He is currently nonverbal and uses an assistive technology device to communicate. In addition to the therapies, he receives at school (OT and Speech), he also receives in-home therapies (Speech, OT, and ABA). Additionally, he participates in adaptive swim lessons through the YMCA and therapeutic horseback riding lessons at the Northland Therapeutic Riding Center. Motor planning can be challenging when he is asked to engage in whole body activities, so we are pursuing an adaptive bike to assist in his development.
Although Tommy was diagnosed with Autism at age 2, Autism does not define our son. No matter the challenge he is facing, Tommy has an enthusiasm and “no quit” attitude that is inspiring. He has progressed in his communication abilities, fine and gross motor skills, and social skills. A specific instance of this is in his growth in OT. Motor planning is especially challenging when asked to engage in two hand activities. Further, these issues are compounded when attempting activities that involve physical tension (i.e. turning a door handle, pulling Ziploc bags apart, opening marker lids, etc.). Recently, Tommy’s rotational hand strength has increased. He can now open a door with both a knob and handle and is using two hands to open Tupperware containers and deodorant caps. He has shown tremendous growth and demonstrates daily the perseverance that inspires me.
Our son also loves getting outside and being active. Tommy loves running, swinging, playing at the playground, and jumping on a trampoline. Procuring an adaptive tricycle will serve dual roles for him and our family. The adaptive bike will continue to build his motor planning skills and gently push him to grow in this much needed area. This equipment will also enhance our family’s life. He has 30 mo. old brother. We routinely go for family walks to a nearby playground. His younger brother has transitioned to a guided tricycle. He can build rapport with his brother by both biking to the park. Moreover, it gives us another activity that benefits his mind and body.
Variety KC believes in the healing power of human touch and will make it possible for Rose to snuggle with her family again soon! Something as simple as equipment should not stand between a child and a hug from her loved ones. If you believe this too, please donate today at varietykc.org/donate. Thank you!
May 10, 2023 | Meet the Kids
Rose is an 18-year-old young woman with the inability to walk due to tethered spinal cord. She is TPN dependent and diagnosed with acute leukemia.
Rose’s dad shares her story, “Over the past two years, Rose has spent all but 7 months in the hospital. Just over two years ago, an undiagnosed medical condition caused her to suddenly lose the ability to sit, stand and walk. She has made minimal progress despite intense therapy at rehab hospitals and at outpatient spinal cord therapy. In July 2022. Rose was dealt another medical surprise, unrelated to her other conditions, She was diagnosed with acute leukemia and has been inpatient in the hospital since then. Her treatment course has been more unique as her GI system does not work properly and she is dependent on IV nutrition. One thing Rose misses so much is snuggling with her twin sister and with her mom. A ceiling lift would allow Rose to be placed in the sectional sofa next to her mom or sister or maybe occasionally even me, her dad. Snuggling is a simple thing but something that power wheelchairs and hospital beds make quite difficult. We would love to have this installed before Rose gets discharged in the next month or two.”
Variety KC believes in the healing power of human touch and will make it possible for Rose to snuggle with her family again soon! Something as simple as equipment should not stand between a child and a hug from her loved ones. If you believe this too, please donate today at varietykc.org/donate. Thank you!
