Meet the Kids – Gabriel

Meet Gabriel, a 4-year-old with an involved diagnosis: Generalized Muscle Weakness, Femoral Anteversion, Unsteady Gait, Global Development Delay, Autism, Mixed Expressive-Receptive Language Disorder. Recently his mother sent Variety KC this note:

“In his short years, Gabriel has had many obstacles in life to tackle and it seems like each one can be a little harder. Gabriel has always had muscle weakness on his right side and has continued delayed mental and physical milestones. He wasn’t able to sit up on his own until 9 months, he didn’t crawl until he was 14 months, he started standing and weight bearing around 18
months, then he took his first steps at 22 months! He is currently on his 4th pair of AFOs which have helped him tremendously with building strength to meet those goals. He’s also been in physical therapy since age of 4 months.

Gabriel loves to play and run just like everyone else, but he does wear out quickly and he requires lots of breaks. Like all things we adjust and know when he’s gone as far as he
can. He has been using this tricycle in his recent therapy sessions and we have found something he is able to do all on his own! It allows his feet to be strapped in so they were
supported and safe, he was able to use his arms to help move the bike so his legs didn’t have to do so much work.

He was happy, he was smiling, and he was riding a bike for the first time! If Gabriel were able to have a bike like this he would be able to ride with his sisters, interact with his
peers, and just ride freely and be like everyone else. As parents we just want our kids to feel included and feel like that belong. Our sweet boy deserves, in our eyes,
everything and we hope you will consider him for this amazing gift. Thank you for taking the time to learn about and read about our special boy.”

Those are magic words aren’t they?  “He was happy, he was smiling, and he was riding a bike for the first time!”   Variety KC partners thought so, and Gabriel got his bike!  Help us to put a smile on every child’s face, donate today at www.varietykc.org/donate 

Thank you!

Meet the Kids – Kenny

Meet the Kids – Kenny

Of course we said “yes” – Please read this letter from Kenny’s mother:

“My little boy’s name is Kenny. He has autism spectrum disorder. He is a very happy, affectionate, and energetic boy. He has a vivid imagination and loves Paw Patrol and Peppa Pig. Kenny has issues with balance and motor skills. He has tried to learn how to ride a two wheeled bike for years with no success and lots of frustration, not even with training wheels. He is unable to balance himself and coordinate the balance and simultaneous movement required for a two wheeled bike.

Now he is at the size where I can’t hold him on the bike to help him balance or guide him on it (we’ve tried that too). When he sees the neighborhood kids his age riding down our sidewalk on their bikes he tries to run after on foot and catch up with them. I know he wants to be like them and experience what it feels like to ride a bike outside. Having the adaptive tricycle would benefit Kenny physically, socially, and emotionally. It would give him the opportunity to interact more with peers, increase his self esteem and sense of accomplishment. It would give him the opportunity
for more movement and encourage a healthy lifestyle, especially since he also struggles with weight issues.”

She is exactly right – every child deserves a bike and it does contribute to confidence, physical wellness, and belonging!  Help us to make sure every child has a bike. Donate today at www.varietykc.org/donate   Thank you!

Meet The Kids – Phoenix

Meet The Kids – Phoenix

Phoenix is a bright, happy little boy who brings joy to all who meet him! Despite being very smart, and understanding most age-appropriate concepts, Phoenix is unable to communicate verbally and at the age of three, has a diagnosis of severe expressive language disorder.

Phoenix has been receiving speech therapy and ABA therapy for over a year now. During that time, his therapists have tried many different forms of communication with Phoenix in order to give him a way to be able to express himself. Although Phoenix was able to learn a few signs, that was not enough to ease his frustration at being unable to communicate his wants and needs. But, there’s been a breakthrough – please read this note from his mom:

Recently, Phoenix’s therapists trialed an iPad communication program called Touch Chat HD with Word Power. Phoenix was immediately successful with the device and his little eyes lit up when he realized he was now able to communicate wants, needs, and other ideas with his family. This brought sheer joy to Phoenix who giggled happily every time he made a choice on the device. Unfortunately, the device trialed with Phoenix was only available to him on a 6-week loan. So, we are hoping that Variety KC can help Phoenix obtain a device that will be his to keep. The possibilities will be endless for this little guy once he has the ability to communicate!”

When the only thing standing in the way of a giggly happy little boy is a technology device, Variety KC friends make sure that device gets into the child’s hands.  Phoenix has his, but more children need theirs. Please donate today at www.varietykc.org/donate Thank you for giving the gift of a voice!

 

Meet the Older Kids – Joseph

Meet the Older Kids – Joseph

Joseph is diagnosed with Spina Bifida. His approach to health is to workout at Crossfit and stay as fit as possible. Working out gives him a sense of pride, a sense of community, and he builds endurance which drives him to be stronger.

To assist his workouts and mobility, a sports wheelchair is needed. It would allow him to pull weight on the sleds at Crossfit and be more mobile in general.

Variety KC partners loved his determination and proven work ethic, and through their donations – Joseph is getting the sports chair that will help his progress.  So many kids and young adults could benefit from the flexibility of a sports chair. If this story speaks to your heart, help us to make this happen at www.varietykc.org/donate     Thank you!

 

Meet the Kids – Jack the Fighter!

Meet the Kids – Jack the Fighter!

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!

Meet the Kids – Brigham Gets a Voice!

Meet the Kids – Brigham Gets a Voice!

We recently received this note from some Variety KC parents, “Brigham is 4-years-old and all boy. He has strengths and struggles just like most children. He could ride a bike and learned to swim at age two. He has impressive problem-solving skills and likes to get into mischief. However, Brigham has his struggles too. He was diagnosed with Apraxia and while he is working toward approximating words, he still is difficult to understand and cannot form whole words or sentences. This causes frustration, stress, and anxiety for all of us. With an AAC device, so many doors would open for Brigham. By giving him a voice we would finally be able to see and hear what he is thinking and feeling. It would not only change Brigham’s life, but our entire family’s.”

Many of our Variety KC Kids have an Apraxia diagnosis. It is a “neurological disorder characterized by the inability to perform learned (familiar) movements on command, even though the command is understood and there is a willingness to perform the movement. Both the desire and the capacity to move are present but the person simply cannot execute the act.”  For example, a student may be taking a spelling test. They know the word, even know the spelling of the word – they just can’t get that word written on their paper at that moment. It’s frustrating, hard on self-esteem, and frequently leads to misunderstandings.

Variety KC Supporters understand the need for devices to assist our kids with Apraxia and they’ve made it possible for Brigham to have the tools he needs.  Please help us to help other kids like Brigham, your donation can give them a voice. www.varietykc.org/donate