Variety Spotlight: Meet John

Variety Spotlight: Meet John

John has fallen in love with basketball, having spent the last season with Matt Bollig and Midwest Adaptive Sports. What he needs is an adaptive wheelchair for to continue his development; with basketball and other sports as well. John’s confidence, fitness, and relationships blossomed as part of this program which is why the family is very excited to encourage him in this way. John was adopted from Uganda, so in addition to “fitting in” as a wheelchair user, he has the added complexity of bridging cultural differences.

“John was adopted from Uganda at the age of seven after the death of his mother during child birth, and his father abandoning him. He spent those years in a home for babies in a poor region of the country, with no individualized care or medical attention. His club feet were never repaired, which relegated him to bear crawling to get around. This eventually led to very serious legions on the outside of his feet which complicated his case. His spina bifida causes bowel and bladder issues for him, and all of this caused the baby home workers to keep him in the bathroom for very long periods of time. Despite this start to his life, John is full of joy, energy, curiosity, and passion. He has flourished in our home, and basketball is now a big part of that for him. This equipment isn’t just about John playing basketball, it’s about allowing him to continue to develop in ways not possible without it!”

Variety KC responds: John received a sports wheelchair from Variety in June of 2019! We are excited to see how this equipment will help you grow! Send us photos of you in action John!  Help other kids like John in reaching further than they thought possible. Give today at VarietyKC.org. Thank you!

Spotlight Kid

Variety Spotlight:  Meet Ollie

Variety Spotlight: Meet Ollie

Ollie seems to have found his calling. His biggest joy is making other people laugh. He is full of life and determined to live it “his way,” even if it means working harder at everything!

Ollie has a neuromuscular disease called SMARD that affects his muscles, including the muscles used for breathing. He has a trach and a ventilator 24/7. He cannot walk on his own or stand without something to hold onto. Still, Ollie is a very active 3-year-old, and has found his own ways of doing things. He uses a gait trainer to walk short distances, and scoots around to get from place to place. He’s become very efficient at his own style of movement. He scoots on his bottom to get around inside, but outside that is harder to do efficiently and safely.

Ollie’s family loves being outdoors. To include Ollie on walks and bike rides, they put him in a bike trailer – but Ollie really wants to ride a big kid bike like his sister. And adaptive bike would allow Ollie to truly participate along with his family and friends, and it would encourage his motivation to keep moving!

An important message from his family:

“We (his family) are used to the way Ollie moves, as well as the machines that help him breathe and keep his airway clear. Understandably, other people aren’t. We love when they ask questions and say hi to him! That’s not typically what happens; many people stare as they walk past or ignore their kid’s curious glances in Ollie’s direction. Seeing him do regular kid things like swing, ride a bike, or go down the slide helps people see the kid behind the disease and machines. Having inclusive playgrounds, bikes, cars, rides, etc. are so important in making that happen, because as hard as we try we can’t always make regular equipment work for him. And seeing the smile on Ollie’s face when he gets to go on a ride like all the other kids makes everything worth it.”

No child should feel invisible. Help us to help all gets to Be Active, Be Social, and Belong. Give today at Varietykc.org.

Spotlight Kid

 

Variety KC Spotlight: Hadley

Variety KC Spotlight: Hadley

One mother’s story:
“My daughter Hadley is simply amazing. Her heart is kind & loving. Her mind is bright & sharp. Her soul is pure & sweet. She loves everyone she meets & I swear that she just connects with people’s souls in an instant…. ask anyone.
She is the definition of perseverance.
She has never let her “disability” stand in her way.
Hadley is paralyzed from the waist down due to being born with Spina Bifida. She lives a very healthy & happy life. She plays with her friends (she has more friends than I can even count, of all ages.). She plays t-ball. She dances at a studio here in Liberty. She enjoys swimming. She is learning to read. She stops to smell every flower we pass.

Hadley is the very best big sister to her little sister. She LOVES school and thrives in the school setting. She lives a very “normal” and happy life. This may seem like a blessing to some people because of her disability, but to us, she lives a happy & “normal” life because she is a happy & “normal” girl.
I don’t really love the word “normal.” I prefer “different,” because in reality we are all different in our very own ways and that’s what makes us all who we are. What I am trying to get at is that she is just like everyone else because she is a person who loves, and likes to play, and learn. She deserves all of the respect and opportunities the rest of the world does. She’s amazing.

Hadley uses a stander now, but she has had for the past 5 years!! Five years is a long time for a growing child to have a piece of equipment. Her current stander has been too small for her for a couple of years now, it is probably more hurtful than helpful for her to use it. She mainly uses this stander at school to do certain activities whether it be in the classroom, at P.E., out on recess, or just taking a stroll down the hall. It gives her more freedom by being able to stand instead of sitting her wheelchair.
A prone stander helps with strong bone growth and to give her bottom and legs a rest from sitting & it keeps pressure sores from appearing. It allows her to be at the same height as her peers (good for self-esteem). She also can do different tasks in her stander vs. her wheelchair.

She also uses it at home, particularly for chores at home because she can reach the top of the table and counters in her stander. And light switches, something we probably don’t even realize that we are flicking one on or off when we do it. The other day, Hadley was in her stander, and all I could see was her bedroom light going on and off, on and off, over and over again. I ask her what she is doing, and she says with so much excitement in her voice, ‘Mom, I’m turning my light on and off!! I’m doing it, and I didn’t even have to ask you for help!!!’ Something so little and mundane to everyone else, was utterly life-altering and exciting to her. It’s all about perspective.

Being able to stand without having the actual ability to stand is just MAGIC. And it truly changes her life!’

Thank you Hadley’s Mom! You’ve given us such a personal look at Hadley’s life and her tremendous love of living it! Variety KC partners are getting Hadley a new stander so she can keep on reaching for the light switch and reaching for the stars! Help us to help other kids like Hadley – give today at varietykc.org.

Variety KC Spotlight – Skylar

Variety KC Spotlight – Skylar

Spotlight Kid

Skylar’s family describes him as a blessing. “He is the youngest of six and  the Star of our Crew. We did not find out until after birth about his genetic syndrome. T9M. It’s so rare (less then 200 worldwide) that most of his doctors really had no information to give us about his prognosis for life. We spend everyday letting him surprise us with what he can do. They did not believe he would ever walk or be able to communicate…although he hasn’t accomplished either yet, he is working so hard on both!! Skylar can scoot around the floor and LOVES to try to keep up with his two brothers. He also LOVES being outside, but his hands and bottom get so scratched up from scooting around that it quickly becomes not so fun for him. Having this tricycle to allow him to play with his siblings and all the other kids on our street would make his life so much more enjoyable!”

When Variety KC receives letters like this, how can we NOT help?  Skylar has so much drive and dedication, we just had to find a way to fund an adaptive tricycle for this amazing little guy! When programs provide appropriate accommodation and support to meet the needs of all children and their families, everyone benefits. Despite several protection laws, many children with special needs and their families continue to face challenges accessing inclusive high-quality early childhood programs. Implementing a cultural of inclusion for children with special needs will take the involvement of all early childhood programs and services.

In toddler care, inclusion means making the benefits of high-quality care available to all children, including those with identified disabilities and those who require additional help or support because of behavioral, health, or developmental issues. Including these children, with appropriate accommodation and support, allows all children to have full active program participation.

Research shows that individualized, high-quality experiences during toddlerhood support early brain development and peer interactions and provide a strong foundation for development and learning for all children. Meaningful inclusion benefits all children and supports children with disabilities in making significant developmental and learning progress.

The children who are included in programs offer important opportunities for building peer-interaction, communication, and problem-solving skills. Research on typically developing children shows positive developmental, social, and attitudinal outcomes in inclusive environments.

Making sure Skylar is included means – everybody wins!  Help all kids to Be Active, Be Social and Belong. Donate today at varietykc.org! Thank you.