Meet the Kids – Keegan!

Keegan is a 16-year-old that is diagnosed with Angelman Syndrome, a rare genetic syndrome that causes neurological and psychological problems that impacts his mobility and communication.

Keegan was diagnosed with Angelman Syndrome at the age of 2 by the Muscles and Nerve Clinic at Children’s Mercy. They observed his ataxia and walking gait at that point confirmed with a positive blood test. Keegan has received physical therapy, aqua therapy, and medical interventions from an early age to assist with the loss and regression in mobility. Keegan is a loving, happy, smart and funny boy that loves to spend time with his family and friends. His favorite activities include going to school, swimming and watching his brother and sister play soccer and basketball. When we are out and about at different activities we always run into someone that knows Keegan from school and tells us what a special kid he is.

Keegan is also very social and wants to be where the action is. When we at our house and in our neighborhood, Keegan likes to be involved in whatever the kids are doing, whether that is riding bikes, playing hide and seek, or going from house to house to do different activities. As Keegan has gotten older his mobility has become more restricted and is prohibiting him from actively participating in his favorite things. He is no longer able to walk long distances and his ataxia increases his change for injury without constant supervision.

Keegan started using the adaptive tricycle at school last year as a means of transportation for him to get to and from long distances in the building. Using the tricycle, he is able to navigate the school safely and independently. We feel that if we were able to have an adaptive tricycle for personal use it would open up many opportunities for Keegan to have some independence in his home surroundings. The adaptive tricycle will also give him the mobility assistance he needs to remain social with his friends and family.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Emma!

Emma has Aicradi Syndrome and uncontrollable epilepsy, with daily seizures. She is unable to use the left side of her body, and is wheelchair bound.

Emma is non-verbal, but she brings so much joy to others with her amazing smile and contagious giggle. Emma has three brothers and being wheelchair bound makes it difficult for her to participate in activities with them. Emma is growing which makes it extremely difficult to transfer her in out of of a car-seat, without injuring her or her caregiver. This wheelchair ramp has very quickly become a necessity in our lives. This wheelchair ramp would help get Emma to doctor appointments, therapy sessions, and social activities with more ease.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Nathaniel!

Nathaniel has CDKL5 deficiency disorder. It is a rare developmental epileptic encephalopathy caused by mutations in the CDKL5 gene. It causes him to have a broad range of clinical symptoms and severity. He has intractable epilepsy and neurodevelopmental delay impacting cognitive, motor, speech, and visual function. He is in a wheelchair, low tone, has seizures, is nonverbal and has cortical visual impairment.

Nathaniel is amazing. Born with the CDKL5 deficiency disorder, his little body and brain have been overcoming obstacles since day one, but Nathaniel has never given up. He battles seizures every day. He has to work twice as hard as typical kids to do simple things like lift his arms and take steps in his walker, but that doesn’t slow him down or steal his joy. Nathaniel can’t be contained to a wheel chair or what society tells him that he is limited to. He doesn’t allow his seizures to slow him down, but instead pushes through every day to enjoy all that life has for him – despite having uncontrolled epilepsy.

Nathaniel loves being around his friends and being a part of the community. He loves going to Royal’s games. He loves riding 4-wheelers with his dad. He loves going fast, he loves loud crowds and he loves being a wild child. Allowing Nathaniel to ride a bike will give him the opportunity for more independent movement along with experiencing the simple joy that every kid deserves – spending your summer days riding your bike through the neighborhood with friends.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Ruby!

Ruby was born with split spine, which is similar to spina bifida. She does not have use of, or feeling in, her left leg. She recently had surgery for ankle and knee contractures and can now walk with a KAFO, AFO and forearm crutches!

Ruby has been so incredibly brave and motivated to learn new things.  Ruby plays wheelchair basketball and doesn’t let some of the much bigger opponents intimidate her. She is a go-getter! We have tried using various tricycles and bikes (altered) in order for Ruby to ride with her friends and family, but unfortunately none of the typical bikes have worked for her. She tried riding a full-sized Top End Excelerator and loved it! Of course, she couldn’t see over the handlebars, but still did great with it. She would really enjoy getting a bike her side and riding with the neighbor kids.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Jalinn!

Jalinn has dwarfism the most common form that is called achondroplasia. With having dwarfism, Jalinn has shortened legs and arms but to know her you would not know other than seeing her height. She doesn’t let her dwarfism stop her. She can and will do anything that she puts her mind too.

From birth we always wanted Jalinn to achieve want she would want to do and not be limited just because of her of height. We have always told her about her dwarfism and to embrace it but to know that she will have some challenges that will come with it. Jalinn has had several surgeries. She will be have surgery later this summer for another spinal decompression of the lumbar region to help with the pain that she is in.  I can tell you that this has not gotten her down, she is looking forward to the surgery and already has a list of questions for the doctor to ask.

Jalinn attends a K through 12 school which is great because she is able to participate in different activities and is accepted by her peers. She plays volleyball, softball and helps manage the basketball team. She will be going into middle school in the fall and our school offers band for middle school and she has selected to take band. She has expressed she would like to play the flute. Her teacher took it upon herself to locate flute that will help suite Jalinn‘s needs when it comes to playing the flute. As you can image the flute is long and with short arms that is a challenge. This flute will help with that challenge and will make Jalinn feel just like any other student in class that will be playing an instrument.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Kennedy!

Haylee spent 8 months in the NICU after being diagnosed with RYR-1 or Central Core Disease. She went from not being able to move at all after birth, to getting bigger and stronger and is now able to move her body on her own. She can sit unassisted but uses a stander and a gait trainer for mobility. She is 100% gtube fed as she has a weak swallow and needs constant suctioning. Her communication has expanded so much and she is definitely what they call a threenager.

Over half of Haylee‘s time is spent at therapies and doctors appointments. She now goes to preschool 2 days a week for a couple of hours and has become such good friends with her classmates. Through therapy, she has found a love of bikes. She cannot ride a bike by herself, as she needs extra support for her body and someone to help push her. With a new adaptive bike, she will be able to strength her leg and arm muscles, while at the same time being inclusive with her older brother when he wants to go for a walk or ride. Not only would this be an amazing opportunity for Haylee, but this will also show her big brother how things can be adapted for Haylee and she can do anything that he can do.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution.