May 10, 2023 | Meet the Kids
Rose is an 18-year-old young woman with the inability to walk due to tethered spinal cord. She is TPN dependent and diagnosed with acute leukemia.
Rose’s dad shares her story, “Over the past two years, Rose has spent all but 7 months in the hospital. Just over two years ago, an undiagnosed medical condition caused her to suddenly lose the ability to sit, stand and walk. She has made minimal progress despite intense therapy at rehab hospitals and at outpatient spinal cord therapy. In July 2022. Rose was dealt another medical surprise, unrelated to her other conditions, She was diagnosed with acute leukemia and has been inpatient in the hospital since then. Her treatment course has been more unique as her GI system does not work properly and she is dependent on IV nutrition. One thing Rose misses so much is snuggling with her twin sister and with her mom. A ceiling lift would allow Rose to be placed in the sectional sofa next to her mom or sister or maybe occasionally even me, her dad. Snuggling is a simple thing but something that power wheelchairs and hospital beds make quite difficult. We would love to have this installed before Rose gets discharged in the next month or two.”
Variety KC believes in the healing power of human touch and will make it possible for Rose to snuggle with her family again soon! Something as simple as equipment should not stand between a child and a hug from her loved ones. If you believe this too, please donate today at varietykc.org/donate. Thank you!
May 10, 2023 | Meet the Kids
Nolan has been diagnosed with Cerebral Palsy, congenital nephrotic syndrome Finnish type, and is a kidney transplant recipient. His family says he is also a superhero!
Nolan is an amazing little guy, his family’s superhero. Nolan was born at 34 weeks, in his early days he overcame pulmonary hypertension and right sided heart failure. Due to his challenges immediately following his birth, he sustained a brain injury that resulted in cerebral palsy. Nolan has a rare genetic form of kidney disease, he battled his native kidneys for 3 years before requiring dialysis and transplant. Despite all of his treatments, surgeries, therapies, and appointments Nolan is a happy and loving little boy. Nolan was given the gift of life for a second time this October when he received his new kidney from his dad.
Nolan’s mother says, “We are so hopeful that after much medical trauma, we can begin to add more quality and enjoyment to his life. A tricycle for Nolan would allow him an opportunity to play with his brother and kids in the neighborhood. To enjoy riding around the neighborhood and feeling included. The adaptive tricycle would also afford Nolan to work on building strength and coordination.”
Variety KC thinks Nolan is a Superhero too! Our friends and donors will make it possible for Nolan to ride his adaptive bike along with his brother and neighborhood friends. If Nolan’s story touches your heart, please donate to help other kids get a safe adaptive bike – varietykc.org/donate. Thank you!
May 10, 2023 | Meet the Kids
Mia has a diagnosis of Hemimegalencephaly and seizures, but this face is the face of courage and resilience!
Mia works hard and has taken great strides to be where she is today. The tasks of everyday life have been difficult but regardless of how Mia feels she pushes through. She is now able to stand while holding onto things, learning to walk, talk, bathe and dress herself. She is a motivated little girl who keeps going no matter how difficult it is.
Mia’s mom says, “I see her as she watches other kids participate in activities that may be difficult for her, but she tries anyway. The bike that we want so badly would be a huge blessing and help her with strengthening her legs and knees. Mia would most definitely enjoy being outside on her bike with her siblings riding around together.”
Variety KC knows the importance of the childhood passage of “riding bikes.” Mia will be getting her safe and adaptive bike – in PURPLE – just as she wants. In Mia’s world, physical effort can be very hard. This adaptive bike will make exercising her legs and knees easier. So many children in our community could benefit from a bike – can you help? If so, donate today at varietykc.org/donate. Thank you!
May 10, 2023 | Meet the Kids
Margot is a toddler with a diagnosis of Triplegic Cerebral Palsy, but that doesn’t slow her down.
Margot is a very young lady with a serious need for speed! Whether that means going down big slides, riding her daddy’s shoulders, going for a run in the jogging stroller, or sitting atop a toy train as it goes down a ramp, Margot loves it all, as evident by her squeaky belly laugh and her unique adorable smile that stands out by the way she squishes her nose and squints her eyes.
And despite her triplegic cerebral palsy, Margot loves to run and jump. Today, she accomplishes that with her daddy’s assistance as he mostly carries her across tables, seatbacks, couches, and other furniture in the house while Margot furiously spins her legs and pushes off whatever she can, whenever she can, all while laughing her laugh and smiling her smile. Margot and her mommy diligently engage in therapy multiple times each day so that one day Margot will be able to be mobile on her own.
Margot has responded particularly well to a room-wide suspension harness device that allows her to engage in gross motor skills therapy, including standing and walking, across a wide area. Unfortunately, she currently only gets to use that device for a short time twice a week when she attends outpatient therapy sessions. The PUMA provided by Variety KC, however, will allow Margot to use that device, albeit on a smaller scale, every day at home so that even outside of therapy sessions Margot can continually engage in therapy as she walks about and plays in the comfort of her own home. Today, walking, running and jumping may be distant goals for Margot, but Variety KC has given Margot the ability to take several strides toward her dream.
Every parent wants to help their child thrive, and I am no different. Even though Margot is insured, many items that would be beneficial to her care are not covered by insurance, and we need to pay out of pocket. It took us almost a full year of back and forth with insurance to get coverage for her stander because they deemed it not medically necessary even though two neurologists said otherwise. Many of the equipment pieces that are recommended for her are in the thousands of dollars (indeed, anything labeled accessible seems to have a hefty surcharge). While we want to provide the equipment to meet her maximum potential, and have the will to put in the time and dedication to using them everyday, without insurance coverage it is hard to provide the largest pieces that we feel would have an incredible impact on her mobility in daily life.
This is exactly where Variety KC steps in – making the impossible, possible. Generous Variety partners have made it possible for Margot to benefit from a harness system not for a short period twice a week, but daily – safely at home with her family. If you can help Variety make seemingly impossible solutions – possible, donate today at varietykc.org/donate. Thank you!
May 10, 2023 | Meet the Kids
Landon is a young man with a diagnosis of Down Syndrome and cerebral palsy. His wants are simple:
Landon loves to be outside playing along with his brothers and neighborhood friends. An adaptive bike would increase his opportunities to interact with others and give him much needed exercise. Sharing the experience of riding a bike along with his siblings and friends will also provide confidence, a sense of freedom, and independence.
It’s been said that “money can’t but happiness, but it can buy a bike and that’s the same thing.” At Variety KC, we have found that to be true! If you can help us to make sure every child has a bike – please donate today at varietykc.org/donate. Thank you!
May 10, 2023 | Meet the Kids
Kayden has a diagnosis of Sotos Syndrome, hypotonia, Den Delays and Autism
Just before his first birthday, Kayden was diagnosed with a gene mutation of Sotos syndrome (gigantism – overgrowth in childhood). The genetic condition includes many underlying conditions including autism which in his case, makes him nonverbal. Because his body is growing at such a fast rate with this form of gigantism, he has hypertonia and developmental delays. In the last year, he has started walking independently. Now that he has met the walking milestone he has a strong desire to explore the world more, including adventures. Due to his lack of stamina he tires very easily.
“Kayden’s personality will melt anyone’s heart. He is so lovable and that can be seen with his constant smile and cute dimples. As his mother I am driven to get the best treatment and adaptive device as possible for him to meet his milestones. It was suggested we get him an adaptive bike by his PT at Dr. Debs center for children. He was measured last year by Freedom Concepts, but we held off during the winter months, but now that spring has sprung, he has a strong desire to get out in the warm weather and we know he is ready for an adaptive bike. We know that with this gift of a tricycle bike he would be happy and can ride around the neighborhood with assistance from us. A special feature of this recommended tricycle has a steering wheel for an adult to push and steer him. He’s ready to explore more than just our neighborhood, but this tricycle would be the beginning of many explorations to come in his life.”
Adaptive bikes come in so many forms and make it possible for kids with various safety needs and mobility challenges to enjoy the milestone of riding a bike. Variety KC will make sure Kayden gets his adaptive bike, but there are so many more in need. If you can help – please donate today at varietykc.org/donate.
