Disability: RYR1- Congenital Myopathy, Gtube and Low Muscle Tone
Haylee has weak muscle tone and cannot stand, crawl, or walk. She has limited mobility in her arms but continues to get stronger every day. She was able to try a ride-on car at Britain Development in therapy and absolutely loved it. Anything that can help her be mobile and independent will just make her stronger. We are so appreciative of Variety Kc for helping Haylee Be active, Be Social and Belong!!
Jacob has cerebral palsy with muscle weakness, difficulty walking, and decreased coordination.
He enjoys playing outside with friends, but isn’t able to keep up with friends and siblings on his bike, even with assistance from his parents. He needs help with hills, leg positioning, and safety using the recumbent bike they purchased, which does not meet his needs.
His request is for the special accessories on the next size up bike, to help him enjoy riding with friends and to keep him safe.
By now, you probably know that Variety KC believes every child should have a bike that fits their needs – and Jacob will be getting what he needs! Help us to help all kids enjoy the rite of passage – bike riding! Donate today at VarietyKC.org/donate/
“Nothing compares to the simple pleasure of riding a bike.”
John F. Kennedy
Boston was diagnosed with autism and has not used any words for communication. His ABA Therapist has been working with him using the Touchchat app on her iPad and he is responding really well to it!
His parents have tried using pictures to help him communicate at home, but is just isn’t working as well as Touchchat and they simply can’t afford a device at this time. Their hope is that he continues to understand the pictures on the app and can translate that understanding into speech. The beauty of Touchchat is, even when speech begins to develop, the app is beneficial in adding new words.
All they really want is to know what Boston wants and needs!
Variety KC partners believe every child should have a voice and a way to be heard. Boston received his device, but there are so many more kiddos who need them. Can you help? Donate today at varietykc.org/donate/
We appreciate the referrals from our partnering organizations, like this one from AbilityKC – about a little boy named Johnier.
“Johnier attends AbilityKC for outpatient services in both occupational therapy and speech therapy. He has a medical diagnosis of Autism Spectrum Disorder and developmental delay. Johnier is a pleasant, curious and motivated 5-year-old boy who is functionally nonverbal and requires the use of an ACC (LAMP Words for Life) device to effectively express his needs and function in daily activities. Johnier is currently learning to communicate through a loner ACC (LAMP) device at home, school and during therapy sessions. Johnier is not yet an independent user with his device and relies on contact gestures for immediate needs. He is able to communicate preferred wants on the device with visual or verbal prompting. He has the fine motor skills required to isolate his index fingers and accurately push on a selected icon for independent use of the device. An AAC device such as (LAMP) is the most appropriate mode of communication that will allow him the greatest independence to participate during learning, socialization and everyday activities considering his fine motor abilities.
LAMP Words for Life requires the use of distinct motor patterns to access and grow one’s vocabulary. Johnier had delayed motor skills, play skills, developmental and cognitive delay and problems with sensory processing. Since he is experiencing such delays, he requires consistent motor patterns for accessibility to vocabulary without a demanding cognitive load when participating in activities. Without access to a device, Johnier is unable to fully participate in occupational therapy sessions as he cannot verbalize wants and needs or distinguish between choices, which leads to temper tantrums that can take extended time to recover from. It is medically necessary for him to have a device to participate in school and everyday activities because communication is required for learning, socialization, and basic living needs.”
We agree! And Johnier is getting his device. Communication is required for learning, socialization, and basic living needs for all kids! Won’t you help Variety KC to help give all kids a voice? Donate today, www.VarietyKC.org/donate/
Jesus was born with Spina Bifida (Spina bifida is a birth defect that occurs when the spine and spinal cord don’t form properly. It falls under the broader category of neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby’s brain and spinal cord and the tissues that enclose them.)
But – his diagnosis doesn’t stop him! He loves all sports, loves to be active, and plays for the KC Kings (wheelchair basketball). In order to keep playing safely, Jesus needs a wheelchair designed specifically for the sport. A basketball wheelchair means inclusion, it means beneficially fitness opportunities, and it means being part of a team!
Variety KC donors look forward to seeing Jesus out on the court! Shouldn’t every child have a chance to get off the bench and into the game? Help us make that possible…donate today at VarietyKC.org/donate/
Thank you so much!