Brilyn was diagnosed with Brain Abnormities. He is an active child and likes to explore his environment. His movement patterns and difficulties with balance make riding tricycles or bicycles that can be purchased at the store unsafe for him.
The features of the tricycle requested would provide him with the support for balance and safety that he needs to be successful in this type of activity. This adaptive tricycle would also allow his family to support his exploration of his surroundings and engage in physical activity in his community. It would give him a sense of freedom, independence, and confidence! All kids should know the confidence that comes from riding their own bike. Unfortunately, the price tag on these bikes can run into the thousands and aren’t possible for many families. However, generous Variety friends make it possible! If you can help us to make sure every kid gets to feel the wind in their hair – please donate today at www.varietykc.org/donate. Thank you!
Logan has 5p- syndrome. The syndrome is caused by a missing part of the “p” arm of the fifth chromosome. It is a spectrum genetic disorder, depending on the location and size of the deletion. Logan is moderately to severely affected. He has global developmental delays, is non-verbal, unable to stand without assistance or walk. Along with his diagnosis, he was a very premature baby, born at 29 weeks. He was on oxygen for the first 1.5 years of his life and has relied on a feeding tube for nutritional needs since birth.
Recently Variety KC received a request for an adaptive bike from Logan’s mother. Her honest and heartfelt description of Logan is worth sharing.
Logan is the funniest, quirkiest, stubbornest toddler. His diagnosis is 5p- syndrome and he was also born at 29 weeks. Initially it was tough – I thought the world had ended. I quickly realized it was all the things that made him so unique that I loved the most.
From the first couple of weeks in the NICU, Logan has had the best Physical and Occupational Therapists. I was given a masterclass in helping him with sensory stimulation, mobility, and development. Since then I, and all his caretakers and practitioners, keep focused on helping Logan reach his milestones. Sometimes it can seem slow-going, like watching molasses, but when Logan unlocks a new skill it is an absolute joy!
Strangers might not recognize Logan’s curiosity and drive to do new things because of his limitations. I can see it in his funny little facial expressions and his hilarious noises. When he finds something he loves doing, it’s all worthwhile. And that is why his PT recommended the Variety Mobility Application to us. We’ve had great success with the bikes at Britain Development Center and in Logan’s therapy. I often comment on how I wish we could take one home. It stimulates reciprocal movement in Logan’s legs, and it’s one of the few things Logan will maintain grip with each hand on the handlebars. And it keeps him engaged and makes him smile.
Organizations such as Variety are so important and its gives families like ours an opportunity to help our little ones reach their maximum potential. I thought so many things were lost with Logan’s diagnosis – like Logan riding a bike. Every time he’s on one and enjoying himself it makes my heart sing. Thank you!
Variety partners and donors believe every child should ride a bike, even the quirky and stubborn ones 🙂 If you can help a child get out and riding, please donate today at VarietyKC.org/donate. Thank you!
Killian is Autistic secondary to the unknown. He is globally delayed and non-verbal, and intellectually delayed, but they are not sure yet to what extent.
Killian is non-verbal, but he likes it when you talk to him. His responses are physical. And while he doesn’t like to be touched very often, he most definitely
wants to interact with you. He is very sweet and loves to climb, run, and play. Water is one of his very favorite things! You’ll find him running around and enjoying
nature parks and playgrounds, but he doesn’t understand danger – and can easily run off.
Because Killian is globally delayed, he can’t use typical items or equipment that other kids might play with. At school they tried him out on an adaptive bike and he
simply lit up with joy! They were able to keep his attention and being on the bike kept him in a regulated area, so he didn’t run off and was able to help him get exercise.
His family members all have bikes and they enjoy riding together. Killian used to ride on back, but has outgrown riding in the child seat safely. An adaptive bike of his own would
do so much! It would provide important exercise. It would give the family an activity they can all enjoy together. And – it would offer Killian the rare opportunity to “hang out” with
other kids. That’s exactly what Variety KC donors want for our kids! The chance to Be Active, Be Social and Belong! Killian is getting his bike thanks to generous donors..but there are more kids waiting for theirs.
If you can help, please donate today at www.varietykc.org/donor Thank you!
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!
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!
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!