Christian is a young man with a diagnosis of Down Syndrome. He is being raised by a single mom in a household long on love, but short on money for extras.
At school, Christian has discovered the joy of riding an adaptive bike. He loves it because it allows him to be social and interact with people. It also provides great physical activity and is both confidence boosting and encourages independence. Having an adaptive tryke at home would allow him to participate in his favorite activity after school and on weekends…meaning more socialization, and more exercise!
Variety KC partners are especially happy to donate adaptive bikes, it’s a passage of childhood (and adulthood) that everyone should have the chance to experience. So, Christian is getting his bike….but there are so many more who need one too. Won’t you help us to make sure every child has a bike they can ride? Donate today at VarietyKC.org/donate/
Disability: Spina Bifida + Hydrocephalus
Caleb is one of nine children, so as you can guess – finances are very tough! Four years ago, he was lucky to get a used basketball wheelchair and he put it to very good use. But now, the safety straps keep breaking (not so safe) and since he doesn’t have replacement wheels, he has to use the wheels from his regular wheelchair – and they fall off! Plus, after four years, he has outgrown the chair itself.
His family doesn’t have the extra money to replace this chair and without it, Caleb will not be able to continue to play the sport that he loves and has played in since he was 7-years-old! His entire family wants this so badly for Caleb and has offered to volunteer for Variety KC to help back back the costs.
We love our Variety KC families – they have huge hearts! And so do our Variety KC donors! Caleb is getting his wheelchair because our supporters know how important activities are for physical health, and a sense of teamwork and independence. Help us to help other kids like Caleb – donate today at www.varietykc.org/donate/
What an inspirational story from Myer’s mom!
We adopted Myer from China when she was 11-months-old. She was a healthy happy baby, busy learning to walk and talk. She was an instant joy to our family as we adjusted to being a family of six. A few months after we arrived home from China, Myer began having seizures, and her body began to shut down. Doctors at Children’s Mercy Hospital diagnosed her with Bacterial Encephalopathy due to Influenza B. The Doctors told us that Myer was so sick and frail that she would probably not live another two weeks, and she was placed on Hospice. God had other plans for Myer, and, after several agonizing weeks, she began to wake up. Eventually, we were able to leave the hospital. Due to residual damage from brain swelling, Myer was a very different little girl than the busy baby we had known just weeks before. She had no vision, no verbal skills, and no ability to use her arms or legs, but we were grateful to still have our daughter. After years of therapy and hard, hard work, Myer has regained her sight, and all of her verbal skills, sassiness and all. Although she has gained strength in her arms and legs, she still suffers from global deficits, delays, and overall weakness. It has been Myer’s beautiful determination and spunky attitude that has gotten her this far, and we have no doubt it will carry her even further in the future. We consider her life a treasure, and each and every day with her is a gift.
Today, Myer is 13 years old, the youngest of four children. She is a sparkly, and sometimes sassy, teenager who loves to sing, paint, watch movies, and swim – activities that are less impacted by her disability. Although Myer uses a wheelchair for mobility, that has not stopped her from being very active, enthusiastically embracing a full life. Several years ago, we moved our growing family into a reverse ranch home with a walkout basement that also has a swimming pool, which we use to supplement Myer’s aquatic therapy. As Myer has grown a little older and a lot bigger, it has become very challenging to move her safely to the downstairs to be part of family activities and to have access to the pool. Several family members who use to routinely help with Myer’s care, including her grandparents, are simply not strong enough to assist anymore in these tasks. Because Myer comes from a large family, our finances have been stretched with college expenses and Myer’s ongoing medical expenses. Just this year (2019) Myer’s older sister graduated from college, her brother is starting college and Myer has had two surgeries (with one more scheduled) and we purchased a new wheelchair. Our family does not qualify for public assistance to help with Myer’s care, and our family does not currently receive any financial assistance from outside sources, public or private, for any of Myer’s expenses. All of these factors have made the chairlift financially impossible for our family to provide. Myer has been involved in aquatic physical therapy for most of her life. In the water, she has freedom and abilities that she doesn’t have on land. Swimming provides Myer with joy, independence and a sense of accomplishment, which is incredibly beneficial in building her self-esteem as she heads into her teen years.
To receive your assistance in installing a chairlift would provide Myer with the ability to freely move up and down the stairs in our home, and would be such a blessing for our family. Myer would have access to all areas of our home and which would help to offset the physical limitations in our home.
Quality of life comes from relationships and experiences, and ideally should not be limited by abilities. As a parent of a special needs child, this truth comes with a great responsibility to make sure that your child’s relationships and experiences are abundantly deep, even when they may not be easy or readily available. We have found that raising our daughter, Myer, has been an adventure in being adaptable and choosing to be joyful in life, which has richly blessed all of us. Myer is the youngest of four siblings, so our family is frequently on-the-go in non-handicapped social circles, which has been both beneficial and challenging. Making adaptations so that Myer can participate alongside everyone else has been a good life lesson for our big kids and has provided many satisfying moments. The smile on Myer’s face when she “danced” in a ballet recital in her wheelchair, or sang a solo in the school talent show, or simply had a “hold your breath” contest with her friends in the pool have taught us one huge truth, that to be seen and to be known, to have a seat at the table, or to have a part in a show, can make life worth living and can make all the tricky moments worth the challenge to get there.
Those who generously provide opportunities to engage Myer in the big world breathe life and hope into her reality. Our family loves being together regardless of the activity, whether eating outside, watching a movie, or swimming in the pool. In these activities, we each have equal footing in engaging with Myer and being a family. Equipment that provides freedom for Myer, such as a chairlift, that matches her desire with the ability to be included, makes us all a better community, a community where everyone has an opportunity to join in the journey, which is actually a gift too valuable for words.
Variety KC donors know how important safety is for caregivers and want want Myer to have the lift that allows both her caregivers/family and herself to get around her home safely. Variety KC wants to make sure all kids have the chance to Be Active, Be Social, and Belong…safely! Help us make this possible for all families, donate today at VarietyKC.org/donate/
Variety KC received this touching letter from a determined and loving mom:
My son, Sam, was born at 31 weeks gestation. Shortly after his birth, his birth mother chose my husband and I to be Sam’s forever family. Sam grew and progressed in the NICU at Research Hospital as expected; he was strong, curious, happy, and full of cuddles. However, in the course of NICU protocol for children born before 32 weeks, Sam had a head ultrasound followed by an MRI that found he had an enlarged left ventricle caused by multiple strokes on the left hemisphere of his brain. The news was devastating, and we took Sam home not knowing what life would hold for this strong baby. We immediately began physical therapy from the Leanne Britain Center and constraint therapy at Ability KC. It soon became apparent that Sam would have increased weakness and abnormal tone on his right side, particularly in his right arm and right leg – making many typical activities challenging. Any activity that requires use of both sides of the body at the same time (i.e. walking, moving from sitting to standing, riding a bike, holding a paper to color, etc.) were and are difficult for Sam. Therapy thus far has focused on increasing the brain’s connection to his right arm and right leg, bearing weight through his right arm and leg, core strengthening for balance, and normalizing his gait pattern given the foot drop on his right side.
It is because of the foot drop in Sam’s right foot that we are writing to you today. When Sam’s walks, he hikes his right hip and swings his legs around to avoid tripping on his foot. This gait pattern is concerning because he is at risk for musculoskeletal abnormalities and injury, tripping and falling, and reinforcing a maladaptive pattern of gait in his brain as he grows. It additionally makes it difficult for him to do typical kid activities like climbing on the playground, running for sports, and keeping up with his peers. To this point, we have tried bracing, splinting, and Botox injections in combination with intense therapy to incourage dorsiflexion of his right foot when he walks, however, none of these methods have given us the desired response and Sam continues to drag his right toe during the swing phase of gait. During an appointment with his doctor, Dr. Katheryn Keeler recommended that we consider the Bioness Functional Electronic Stimulator. Sam was able to try it and saw immediate results. His right toe immediately began to clear and he was able to kick a ball and walk with a typical pattern for the first time in his life. He tolerated the electrical stimulation well and was determined to be a good candidate for this system.
Of course Variety KC partners want Sam to have the equipment he needs, especially with such encouraging outcomes! It’s amazing how one particular therapy can open so many possibilities! Help Variety KC to make mobility, communication, and inclusion possible for all kids! Donate today at varietykc.org/donate/
Variety KC recently received this letter on behalf of Hunter, a teenager going through a number of life changes:
Hunter is nearly a teen and has been diagnosed with severe autism, simple complex seizures,impulse control disorder, ADD, feeding difficulties with feeding tube.and pervasive developmental disorder.Even with these challenges, he is in main stream courses for science and math (for just the second time ever!)
At school they work online with Mac computers and when they send home homework, he is having trouble with the different formatting on his old iPad. His autism team confirms that newer device will help Hunter out, but his school doesn’t provide devices for home use. (Hunters iPad is outdated, has battery troubles and a cracked screen.) A bigger screen will help him out because he has glasses, which are hard to keep on him.
Hunter also has noise sensitivities like most autism kiddos, and it’s been suggested that we try the noise canceling earphones so that the old big earphones don’t call attention to him at social events or in the school setting. Hunter is very excited about electronics and he will work on other projects in exchange for time on youtube. We also use the electronic device to encourage communication with other peers his age. Hunter has extreme social behaviors he tends to stay to himself unless he is prompted by parents with what to say. This would change both Hunter’s life and his parent’s lives during his hard transition to teen years and to middle school main stream classes.
Hunter’s personality is spunky! He enjoys electronic items, trains and nerf guns. His meds make it hard for him to be out in the sun because he can come down with heat stroke faster…so he tends to stay inside where its cooler. We enjoy watching learning shows, how-to shows, shows about trains (lots of shows about trains, he is so fascinated by them! You would be shocked to hear the amount of knowledge he has discovered about trains over the past 10 years.
Variety KC partners have seen tremendous benefits from the use of communication and assistive technology devices and Hunter is getting his new iPad. Please help us to make sure that every child has the tools they need for success at school and home. Donate today at VarietyKC.org/donate/ Thank you!
Disability: Spina Bifida + Hydrocephalus
Stephen “Kai Kai” Spina Bifida* is an up and coming basketball player and he isn’t going to let a diagnosis of Spina Bifida and Hydrocephalus stop him!
His mom explains that he is very active in playing wheelchair basketball and it would be extremely beneficial if he had his own chair so that he could practice at home and play outside of structured game times. He has participated in the basketball program for over a year now and that program is expanding. In the past, he has been able to borrow a wheelchair designed for the sport, but with the expanded play – it would be a great help if he had his own.
Variety KC donors know just how important it is for kids to keep physically active and how essential it is for them to be involved in team sports. Kai Kai is getting his wheelchair and we can’t wait to see what he can do! Please help other kids like Kai Kai by donating today at www.varietykc.org/donate/ Thank you!
*Spina Bifida is a birth defect that occurs when the spine and spinal cord don’t form properly. It falls under the broader category of neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby’s brain and spinal cord and the tissues that enclose them.