Sylvia was born with a very rare genetic condition called USP9X Related Disorders. This has caused global developmental disabilities and autism, as well as a variety of other medical conditions such as heart defects and a submucosal cleft palate. Despite spending much of her first year hospitalized with surgeries and chronic pneumonia, by the time Sylvia was 18 months old she was walking with the assistance of orthotics and a posterior walker. Her expression of sheer joy when she got her walker was unforgettable!
Now, at nine years old, Sylvia is able to walk on her own, at her own pace, for short distances. She is wearing a structural scoliosis suit and hard brace to fight worsening scoliosis and kyphosis, but she doesn’t let it slow her down. Her favorite thing to do outside is be pushed in a swing. Right now, when her family goes on walks she rides some of the trip in a wagon while her younger sister rides a scooter or bike.
At school, Sylvia was introduced to an adaptive bicycle in her P.E. class and she loves it! Imagine what she could do with an adaptive bike of her own!
Variety KC partners believe every child deserves to ride a bike and knows how much Sylvia would love to ride bikes with her sister and family. Sylvia got her bike and now has a safe way to engage with family and friends and keep progressing physically. Help us to make sure every child has a bike they can ride safely – donate today at www.varietykc.org/donate Thank you!
It’s that time of year! Time for kids to play outside, hang out with the friends, and ride their bikes. But, not all bikes are available for a child with developmental disabilities.
Meet Penny, a happy ten-year-old with a diagnosis of Fragile X and Autism. She loves playing with her neighbors, but can’t always keep up. She’s tried a bike with training wheels, but don’t have the motor strength to ride it safely and successfully. An adaptive tricycle is the answer. As her mother says, “it will bring her great joy.” It also will bring her a safe way to ride along with her friends, a sense of freedom and independence, and important physical activity.
Bringing “joy” is what Variety KC donors do best, and Penny is now ready for a summer of bike riding. If you believe like we do that all kids should have a chance to Be Active, Be Social, and Belong – please donate today at www.varietykc.org/donate Thank you!
Keisha was shaken as an infant and suffers from some developmental challenges and hemiparesis of her left side. She has some atrophy of the muscles on her left side and struggles to stand and walk. She is making great progress and desperately wants to be self-mobile. She originally had to have a tracheostomy tube, but has progressed enough that recently her trach tube was removed and seems to be doing well with all of the measurable for oxygen, pulse, and blood pressure. We hope that the closure of her stoma in her throat will allow more oxygen to her left side and enable her, with lots of exercise and physical therapy, to begin to stand and walk on her own. We hope that getting her an adjustable trike will allow her to pedal and improve synchronized movement in her legs safely. We think this may improve her circulation and strength over time.
|“Yes, Keisha was shaken as an infant, but that has not stopped her beautiful personality from shining through. She continues to fight for physical and cognitive gains and has been blowing us all away with all the growth she has shown. We’ve known her for about a year, and she has been in our home since February, but we have seen so much development that it is hard to see any barriers that will keep this girl down. She is absolutely the best example I can think of for the triumph of the human spirit and we love when she can share her gifts for positive motivation and strength to overcome adversity with the world.
Keisha is an inspiration. Her smile brightens the whole room and she can tell an entire story with her eyes. She is truly an amazing and inspiring little girl. Nothing gets her down. We have seen her go from being largely mobile on only her bottom to zipping around the room with just the use of her right arm and leg. She has taken her first step with us and we love to take her on walks in her walker. She is the most social of butterflies and greets everyone she passes with a smile and a wave. She has recently begun communicating verbally and says hi loudly to all our neighbors and friends. She loves giving warm hugs and high fives and we love her very much.
|Keisha is an extrovert and bright shining example of somebody that always wants to brighten the days of those around her. Her smile and wave instantly bring you in and make her your friend. She was nonverbal for most of her life, so she can truly speak to you in facial expressions and hand gestures and her ability to smile brighter than anybody else. She can now sing along to the ABCs and Baby shark and loves music at the top of her lungs. Her older sisters have introduced her to some of their old favorites and she picks them up quickly. Her bright cheery nature is bolstered by a brilliant mind that is soaking up so much information. She loves to go on walks and we love to take her. We hope we can start taking her on fun bike rides as well.
The trike, we think, is the next step in building strength in her legs and improving circulation to her atrophied limbs. She is going to do great things and shine.”
Variety KC partners and donors think every kid should have a bike! Won’t you help us make that possible? Donate today at www.varietykc.org/donate
Ja’Mya is very determined and works very hard at school to meet her goals despite her disability. She is a very sweet girl and enjoys interacting with a variety of people. She has tackled a lot of obstacles in her young life and is an overcomer! And above all – Ja’Mya loves spending time with her family.
Ja’Mya would benefit a lot from having an adaptive bike to assist with her sensory regulation combined with her regulation diet. She loves riding bikes, but does not have one at home.She is very excited at the possibility of getting a bike because she sees other children playing and riding outside. This would give her an opportunity to get physical exercise, to experience a sense of independence and most importantly – being included in activities with friends and family.
To help Ja’Mya get her bike, please donate now at www.varietykc.org/donate
Quinton was born with Hypoplastic Left Heart Syndrome and by the time he was six months old, he had already undergone two open heart surgeries. At 13 months, Quinton suffered seizures while sleeping. The lack of oxygen to his brain caused significant brain damage. He quickly went from a boy who was walking, learning and talking – to completely non-verbal, tube fed, wheelchair reliant.
His mom says Quinton has an amazing smile and he uses it during his favorite activities of being outdoors and being included. Summers for Quinton mean outside play and visits to the lake.
It isn’t easy and certainly at times they have to get very creative, but Quinton’s family tries to keep his life as “normal” as possible. His two younger sisters enjoy going on bike rides, after all – the Katy Trail is right by their home. Quinton would love to go too, but they couldn’t find a bike that fits his needs.
Now they have! This bike, powered by his parents, gives Quinton a front seat look at the world! It gives him the freedom to be outdoors and involved with his sisters. Thank you Variety KC donors – you made this happen for Quinton!
Doesn’t every kid deserve the right bike? Donate today at www.varietykc.org/donate
A note from Jax’s mom:
“Our little guy was a surprise all the way around! When we thought we were done with having kids, not only did he surprise us with his presence, but also with a little bit extra. Jax has Down Syndrome. His diagnosis was scary at first, the unknown of what our future would hold. Now looking back, there were so many emotions of fear that just were a waste of energy! He is just like any other kid; we have our ups and our downs. He has things he absolutely loves, and those he dislikes. I’m pretty sure terrible twos are right around the corner. One of the toughest times emotionally in our lives, turned into the most beautiful piece to fit into our family. The unknown is always going to be there, typical child or not, we just see it through a different lens and embrace it! There is absolutely no way (maybe I am biased) you can meet Jax and leave without a smile, he is contagious!
Jax is two and not yet walking, but he sure does get around, probably faster than if he were standing on his two feet. When we bought the house we are in now, we didn’t plan on having any more kids, so a house full of stairs is what we have! Our first thoughts were, “how in the heck are we going to gate our house?” It would literally be impossible! One of his early intervention therapists said he would just have to learn the stairs, and that he certainly has. That boy can slide down those stairs so fast and quietly, it’s freakishly weird! He does the same going up. So why walk when you can get there in a flash by crawling?!
He is definitely persistent when it comes to being able to do something that his older brother does. It’s pretty amazing to see him try to figure out things without even been shown them, for example a phone or the tv remote. Kids these days are so dang smart! When we are outside, Jax wants to be outside doing what the other kids are doing, not just crawling around on the ground. For him to have a bike that he can grow with and use to feel included would mean the world to us! I don’t know when Jax will realize he is different, and that is something that we one day will have to do. But right now, and here in the next few years, I don’t think he will care how different he is, he will just want to be able to play like everyone else!
Jax is the sweetest, ball of Joy I have ever met. He literally lights up the room anywhere we go. If it’s at Costco wanting to give fist bumps to everyone or spending his Sunday Mornings in the nursery at church, myself and everyone who encounters him just can’t get enough!! He LOVES his big brother Eli. They have been best buds since the day he was born! So basically, anything Eli likes, Jax Likes. Typical boy stuff like balls, books, markers, and cars are a hit in our home! Jax also loves his music. Anything he can find to bang on or if he is nearby the piano, he is constantly Jammin out! I love to run, so Jax has been forced to love to be in the stroller. He has never complained, and we usually make some pitstops at the parks. We are also a family that is on the go, so I feel like whenever we have a free day, we try to hit up the Zoo or Science City, maybe get out and about somehow! Jax is also forced to love the gym I work out at, and he has his crew of kiddos that he spends time with throughout the week!”
(Come on – look at that face, admit it – you’re smiling back!) This little ball of energy needs an adaptive bike to keep up with his active family and friends. It will help him develop confidence and independence, as well as provide the physical exercise that is so important for kids with special needs.
Please help us to get Jax his bike. Donate today at varietykc.org/donate/ Thank you!