Isaiah has so much energy, but that’s one of the challenges of Duchenne Muscular Dystrophy, a condition that can be carried by females, but presents in males. Before boys with DMD lose ambulation, they are challenged with a loss of energy, walking long distances, and staying upright.. Over the course of the day at school or at home with our family, Isaiah wears down physically and mentally. Many families get scooters to assist in this phase, but they are hard to drive for an 8 year-old and they also lead to posture and form difficulties. A piece of equipment called SmartDrive is a vast improvement over the scooter because it encourages good positive posture, allows Isaiah independence, and by reducing the amount of walking – helps him save him energy during the day. of a lot of walking. This means more quality time with friends, family, and at school!
Help other kids like Isaiah to get the equipment they need for a more active and inclusive life. Give today at VarietyKC.org/donate. Thank you!!,
Jacob has cerebral palsy with muscle weakness, difficulty walking, and decreased coordination.
He enjoys playing outside with friends, but isn’t able to keep up with friends and siblings on his bike, even with assistance from his parents. He needs help with hills, leg positioning, and safety using the recumbent bike they purchased, which does not meet his needs.
His request is for the special accessories on the next size up bike, to help him enjoy riding with friends and to keep him safe.
By now, you probably know that Variety KC believes every child should have a bike that fits their needs – and Jacob will be getting what he needs! Help us to help all kids enjoy the rite of passage – bike riding! Donate today at VarietyKC.org/donate/
“Nothing compares to the simple pleasure of riding a bike.”
John F. Kennedy
Jesus was born with Spina Bifida (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.)
But – his diagnosis doesn’t stop him! He loves all sports, loves to be active, and plays for the KC Kings (wheelchair basketball). In order to keep playing safely, Jesus needs a wheelchair designed specifically for the sport. A basketball wheelchair means inclusion, it means beneficially fitness opportunities, and it means being part of a team!
Variety KC donors look forward to seeing Jesus out on the court! Shouldn’t every child have a chance to get off the bench and into the game? Help us make that possible…donate today at VarietyKC.org/donate/
Thank you so much!
Hayden is a very busy, outdoorsy kind of guy. He was born with a rare chromosome disorder resulting in two micro-deletions. This causes global physical and cognitive delays and difficulties. He is nonverbal and has physical limitations. In a big milestone, he recently started walking, but is quickly fatigued and can fall if the terrain is not perfectly smooth.
Here’s what his mom shared with us about Hayden’s life:
“Hayden is energetic and loves being outside! He’d live outside if it was up to him! 🙂 He is missing out on on the benefit of so many walks and trail hikes due to always being in his wheelchair or special needs stroller. It’s hard to maneuver wheeled items in the woods! Hayden would like be able to walk alongside us when possible, then hitch a ride on Dad’s back when he gets tired or the terrain gets too rough for him. Hayden would also have a completely different perspective on the world with the Freeloader! He would be able to make eye contact with more people and have more social interactions because of the height he’d be at! The freedom to enjoy the outdoors with his family as an 8-year-old boy would be a gift beyond words. Not only would Hayden be able to enjoy hikes, we would be able to go on longer walks in the city too! Downtown KC is really coming alive with things to do with family and we would be able to enjoy these events even more with the Freeloader. Finally, let’s be honest, wheelchairs & specialty strollers are HEAVY-loading, unloading, and just maneuvering around can exhaust the caregiver. The Freeloader only weighs a few pounds and can be worn even if Hayden isn’t riding. It’s convenience and the opportunity for freedom and new adventures are why we would love the support of Variety KC! Thanks for considering our request!
Variety KC partners know how important mobility is! Hayden is getting his Freeloader and we look forward to see him out and about, all over town. Every child deserves to Be Active, Be Social, and Belong – please help Variety KC make that happen, donate today at VarietyKC.org/donate/
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/
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/