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

 

Meet the Kids – Micah!

Meet the Kids – Micah!

Micah’s challenges:   Micah has been diagnosed with Autism Spectrum Disorder – Social Communication Severity Level 3 and Restricted/Repetitive Behaviors and Interests Severity Level 3 with Global Developmental Delay. He also has Mixed Receptive/Expressive Language Disorder and Impulse Control Disorder. 

Micah is an active boy who is very loving and caring, he loves his family and his three sisters. Although Micah is not able to communicate with words, he is a times able to show his parents what he wants through his actions and and hand gestures. He understands more than he is able to communicate, and in a very sweet way – he gives his mom kisses to show what he wants. As sweet as kisses are, his parents would like to see him communicate his wants and needs through words, starting with a TouchChat device. Currently the family has one tablet device, but it is shared among four siblings. Having a device of his own would help Micah to better communicate his needs and wants at home and at school.

The on again off again sharing of a device can be so frustrating for a non-verbal child. Variety KC understands the importance of giving Micah a voice of his own! Every child deserves to be heard and understood – help Variety KC make that happen, donate today!  Thank you!  www.varietykc.org/donate

 

Meet the Kids – Emmaus

Meet the Kids – Emmaus

 

A little about Emmaus’s condition; Emmaus has Tuberous Sclerosis Complex (TSC). TSC is a multisystem genetic disease that causes tumors to grow in the organs of the central nervous system. These tumors are benign but cause many problems. Emmaus has numerous tumors in her brain that cause her to have epilepsy, autism and a generalized developmental delay. She is almost 11 but functions on more of a 3-year-old level. Emmaus has low verbal communication skills due to her disability.

Emmaus is a young girl full of giggles and hugs. She has overcome an incredible amount in her 10 years of life including thousands of seizures, brain surgery and a couple of life threatening illnesses. She might have Tuberous Sclerosis Complex (TSC), but TSC doesn’t have her. Emmaus loves her people and quickly wins them over with her sweet demeanor and huge smile. Emmaus loves music of all sorts, horses, car rides and her sisters. Emmaus doesn’t have many words but can get a group laughing. As her mother says, “she truly is a wonderful child and our lives are brighter because she is in it.”  And now it’s Variety KC’s chance to make Emmaus’ life a little brighter – with a Discovery Bike that is adapted for her use and safety. An adaptive bike will give her the chance to experience freedom, independence, and encourage more opportunities to engage with friends and neighbors. When you see her riding down the sidewalk with that huge smile on her face, but sure to wave and cheer her on! 

Every child deserves a bike! Help Variety KC make that possible – donate today www.varietykc.org/donate.  Thank you!