Meet the Kids – Tate

Meet the Kids – Tate

 

Tate was born with Down syndrome and cortical visual impairment. In late 2019, he developed intestinal failure due to small bowel neuropathy and malabsorption. He has a central line, is TPN dependent, uses a g-tube for medicines and has an ileostomy. He has also developed chronic kidney disease. He also has hypermobility syndrome and Sandifer syndrome. He is fully ambulatory, but they use a medical stroller for his safety when they are in most public situations due to his lack of stamina. He is nonspeaking and recently started using an AAC device.

Meet Tate – an amazing 7-year-old boy. He has beautiful brown skin and amazing dark brown eyes. He is so loving and lights up a room with his smile. He brings joy to everyone who knows him. He also has an incredibly high emotional quotient and knows how to comfort people who are sad or grieving. Tate also happens to have a lot of complex medical conditions that have made life difficult at times. Tate was born with Down syndrome and cortical visual impairment along with hypermobility syndrome. In November 2019, he developed severe intestinal neuropathy and malabsorption. He lost a lot of weight and spent several months hospitalized at Children’s Mercy Hospital. He was discharged in March 2020 (the same week of the COVID shutdown) with a central line in his chest and is fed via IV nutrition along with an ileostomy and g-tube for medicines. The hope was that these interventions would be temporary, but so far these interventions remain. Tate was also recently diagnosed with chronic kidney disease and needs intermittent iron infusions for anemia. Some of these challenges have made regular interactions with other kids his age more difficult. He is very close to the adults in his world (parents, teachers, paras and medical doctors), and he loves his siblings. Tate loves to live his best life, and that may look a little different depending on his day. Tate loves to “go” in whatever form that takes. He really loves to feel the wind in his hair, so I just know that an adaptive bike will be such an incredible enhancement to his quality of life. No matter what struggles Tate is facing, he never gives up. He is the biggest fighter I know, and he is the bravest boy I have ever met.”

Wow, Tate has been through so much in his short life and continues to fight and progress. One of the things that Tate’s family mentioned was that his challenges makes it hard to have interactions with other kids.  At Variety KC we believe every child deserves to Be Active, Be Social, and Belong.  We also know that an adaptive bike will allow Tate to get out there and “go” with other kids and family members, experience freedom of movement and the empowering sense of guiding his own bike. Please help to get Tate and other kids like him the bikes that will benefit them so much!   Donate today at www.varietykc.org/donate        Thank you!

 

 

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!

Meet the Kids – Sylvia!

Meet the Kids – Sylvia!

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!

 

 

Meet the Kids – Penny!

Meet the Kids – Penny!

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!

 

Meet the Kids – Keisha!

Meet the Kids – Keisha!

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

Thank you!

Meet the Kids – Ja’Mya!

Meet the Kids – Ja’Mya!

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

Thank you!