Meet the Kids – Anie

Meet the Kids – Anie

Anie was diagnosed with a rare and unnamed genetic deletion and duplication disorder. (Slow motility)

Anje is a happy little girl who loves her life. She is everyone’s darling at home with family, at school, and out in the community.  Anje does not know that she is different from other children. She
laughs and plays, and likes to help in the kitchen, and snuggle on the couch for storybook time. But, her family knows that Anje has a rare genetic mutation that affects her globally. She has a string of diagnoses and none of them can stop her, especially with the right equipment. A tandem recumbent trike will provide Anje with an opportunity to enjoy exercising outdoors with her family. She loves pedaling her bike as the wind blows through her hair. From bike trailer, to tricycle, to WeeHoo, she was always ready to cycle for pleasure. And, while she is having fun, she is receiving all the benefits we all enjoy from exercise. Cycling helps Anje to overcome deficiencies of low muscle tone,
improves Anje’s core strength, and thus her breathing…….and helps her digestive system motility so that there are  fewer evenings with belly cramps. A tandem recumbent trike is perfect for Anje and her family, and this bike has the ability to grow with her as she continues to grow!  She will get many years out of this bike.

Knowing that Anie loves to cycle means she’ll be happily riding this bike for years to come. Every kid deserves the chance to ride a bike, please help Variety make it possible for all.  Donate today at www.varietykc.org/donate    Thank you!

Meet the Kids – Alicia

Meet the Kids – Alicia

Look at that smile! It’s absolutely contagious.

Meet Alicia, the girl behind the smile. Alicia was diagnosed with Periventricular Leukomalacia, Quadriplegic Spastic Cerebral Palsy, Dystonia, and Cortical Visual Impairment

Her family claims that Alicia is their hero. She was born at 31 weeks and received this diagnosis at age one. Since then she has been in
daily therapy to overcome all her challenges. She has worked with First Step and CCVI and made great progress. She currently attends ECC in Liberty daily and has Therapy at Ability KC where she is learning
to walk. The adaptive bike they have applied for will help improve her muscle memory as well as allow her to be outside and feel independence. Until now, Alicia has always had to be the passenger and watch her sister walk, run and ride outside. This will allow her to play side by side, branch out and meet new friends, and best of all – it will let everyone see her smile.

Every child deserves a bike!  Please help kids like Alicia to get theirs – donate today at www.varietykc.org/donate      Thank you!

Meet the Kids – Gaige!

Gaige has been diagnosed with 22q11.2 deletion syndrome, polymicrogyria with right sided hemiplegia, cystic right kidney, VPI, CHD,
learning, speech and developmental delays. That’s a lot for such a young guy.

But then, Gaige has been through more in his short life than most people go through in a lifetime. He has had five surgeries so far and is scheduled for a complicated leg surgery in December. He has issues with stamina and needs his wheelchair to help with distances. Over the last few months, his ability to walk has greatly decreased and he is using his wheel chair on a daily basis. His previous wheelchair was a manual chair which he did not have the ability to control. Currently we have a loaner chair with right hand controls,
however, he tires easily and still needs to be pushed around. He is getting older and loves to be independent and not have someone push him around. Without the power assist, he will not be able to do this. Gaige brings joy to everyone he interacts with. He deals with his struggles, doctor appointments, surgeries, and hospitalization so well. I could not imagine life without him. I want him to have the best life with as much independence as he can.

A power wheelchair would allow Gaige to have a sense of independence, it would save his strength and allow him to more fully participate with family and friends. Most people don’t even know this is an option for wheelchair users, but it is very helpful to someone in Gaige’s situation.  They are less expensive than a power wheelchair, but still quite costly at $5,000.  Variety KC’s partners know the value of this equipment and helping to make this possible for Gaige!  You can help too, simply donate at www.varietykc.org/donate.  We appreciate you!

Meet the Kids – Dean!

Meet the Kids – Dean!

 At 2 years and 4 months, Dean was diagnosed with severe Autism Spectrum Disorder. In the beginning, Dean refused to make attempts to interact with others and rarely made eye contact even with his parents. He was mostly unresponsive to others being playful and his facial expressions remained flat. He is nonverbal and has no expressive language. This has stunted his progress in milestones greatly because he does not understand what is communicated to him nor does he know how to express himself in any way. He became reliant on his parents as a tool of necessary communication. As a nonverbal child, it is difficult to communicate and interact with anyone who does not have the patience to understand what he/she is trying to tell them. This is an every day struggle for Dean. Due to the communication barrier, he limited the number of people in his inner circle. He became more introverted and would rather play by himself rather than in a social setting. If he was forced to join a social setting, he becomes overwhelmed and will shut down. He either gets inside his own head or takes a nap and waits until the family is home where he is more comfortable. This prevents him from learning how to build relationships with other people and has stunted many other behavioral milestones. Without intervention, this can become a liability for further progression in his ABA therapy.

Dean is a bright, fun-loving, and curious little three-year-old. He loves to swim, climb, and do obstacle courses. His favorite color is orange and loves to snack on Biscotti. He has been taking ABA therapy since he was two and has been progressing in most areas. However, he remained stagnant in his speech and language therapy. To this day, he can only say a handful of words and has not managed to say a full sentence. The speech and language barrier are preventing him from progressing in other social behavioral areas. For example, when we take him to a park and he wants to play and interact with the other kids, he does not know how to start that interaction. What he does is stand in front of them and stare hoping they understand that he wants to play too. Eventually, the kids run off and play somewhere else, leaving Dean alone and confused as to why they don’t understand what he wants to do. We believe that by getting Dean the right tools, he will be able to overcome this obstacle and help him build the confidence he needs to increase relationships with family and friends in social settings.”

Variety KC wants Dean to have the right tools as well.  We know that through a communication device and apps, frustration can be reduced and engagement encouraged. Please help us to provide Dean with the resources he needs – and all the other kids just like Dean.  Every child deserves to communicate in order to be active, be social, and belong!  Donate today at varietykc.org/donate.  Thank you!

 

Meet the Kids –

Meet the Kids –

What an amazing little boy! Check out this letter from Krue’s family:“Krue was diagnosed with autism earlier this year and has since overcome so many obstacles at the young age of 3. He has major sensory aversions which limit his communication and eating. His sensory issues stem from wet objects such as food or his mouth, so talking and communicating is a difficult task for Krue. Krue is such an amazingly smart boy and learned how to read to help with his communication at the age of 2. He loves to watch music videos and sing. His joy of music is a light to our lives.This equipment will enhance Krue’s life by allowing him to use apps to help communicate as well as being able to let him enjoy his love of music. Music makes him happy and creates a space where he can use his words. This will help our family’s life by allowing him to communicate with me, his mother, to better assist his needs. This will allow me to overcome many obstacles we face when trying to figure out what Krue wants or needs. It will also help him communicate with his brother, grandma and grandpa to establish those connections needed to develop relationships. An iPad would be a blessing to help communicate and offer an outlet to Krue so he can experience music he loves.”

Variety KC understands how important communication is for inclusion. As Krue ages, he’ll be able to engage better at school and with friends as well as his family. Early resources are so important in communication, please help us that every child who needs a “voice” can get one.  Donate today – www.varietykc.org/donate.   Thank you!

Meet The Kids – Mac (#35, KC Kings Basketball)

Meet The Kids – Mac (#35, KC Kings Basketball)

Dear Ms.Deb,

This is a letter asking Variety for a grant so I can get a new chair. I need a new basketball chair because the one I have now is too small for me.

First, I want you to know that wheelchair basketball means everything to me.It has changed my life more than I thought it would. Wheelchair basketball showed me there are more people out there that are like me. It has also shown me that I can do sports that I thought I never would be able to do in an adaptive way like basketball and tennis. In wheelchair basketball you can travel to other states and see more places and meet new people.

Second, I need a new chair because the one I got from Variety a couple years ago is now too small for me. Over the years I have grown and as I have grown the wheelchair started to push in on my hips. My mom can not afford to pay for one herself because they are very expensive, so we have come to you in hopes that you could give me a grant to get a new one. Me and my mom and coach have done all the measurements and things already so all we need is the grant.

Finally,wheelchair basketball is the biggest part of my life and I would hate to lose it now. All ask for a grant for this chair.I know giving grants is hard but I am sure I can convince you.I hope you consider giving me this grant so I can keep playing wheelchair basketball.

Sincerely,

Mac Summerfield, #35 KC Kings

Mac has Diastrophic Dysplasia, which is a rare form of dwarfism. Mac was born with bilateral club feet and has had multiple surgeries to correct his feet, knees, and hips to allow him some mobility to walk. Mac has also developed Amplified Pain Syndrome, which causes him chronic pain. Mac has limited mobility – he can walk short distances but also uses crutches and a walker. He uses a wheelchair at school and for longer distances. When you meet Mac for the first time, the first thing you will notice is his personality – he is kind, outgoing (after some initial shyness) and loves to be around people. While his disability does limit his mobility, it does not limit his ability to be a normal 12 year old. He wants to be out on the court playing basketball, tennis and in the pool with his friends.

Mac has been playing wheelchair basketball for almost 4 years. We found out about the program while attending a Variety KC ice skating event several years ago, where we met Mac’s coach. Since the very first practice, Mac has been hooked! Not only does he love playing the sport, but he has found a camaraderie with his teammates and coaches that he doesn’t have anywhere else. Everyone on the court has a disability, and none of them let it stop them from being competitive and having a great time. Mac has told me on more than one occasion how much he loves his team and how comfortable he feels around his coaches and friends. Being a part of this team not only allows Mac to play a competitive sport and learn sportsmanship skills he wouldn’t otherwise have the opportunity to learn, it’s also great for him to be physically active. With his Amplified Pain Syndrome, the more sedentary Mac is, the more pain he has when he does become active. Playing basketball or tennis each week is a great way for him to stay active and help keep the APS at bay.

Mac has such passion and drive and Variety KC partners will make it possible for him to keep participating in the sports he loves and needs. Won’t you help others to have the same opportunities? Donate today at www.varietykc.org/donate