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/
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/
My daughter Harriet has significant developmental delays, most noticeably with her speech. She is falling further and further behind from her neurotypical peers as her language delays also add to her social and emotional delays. Harriet’s gross and fine motor delays also pose constant challenges for her. We are going to speech, PT, and OT, and have enrolled her in a wonderful preschool that will help foster her growth and progress.
Harriet has a very sweet and happy temperament. She loves exploring, singing, flipping through books, and playing in her kitchen. We love singing songs and attending music classes together.
Harriet loves climbing onto her older brothers tricycles, bikes, and scooters, but she lacks the gross motor development to make these fun ride on toys go. The Velcro pedals and hand cranks make the Amtryke a bike that Harriet can actually use! I think it will help her motor planning as well as gross motor skills immensely. She can actually be a part of family walks rather than simply being pushed in the stroller.
Variety KC wants Harriet to get active, get out there…and get involved with her family and neighbors. Harriet is getting her bike from caring Variety KC supporters. After all, doesn’t every child deserve a bike? Help us to make that happen – donate today at varietykc.org/donate/
Braeden’s Disability: Cerebral Palsy – (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles.
Braeden’s Story: He was born 13 weeks premature and spent the first 12 weeks of his life in the NICU. When he was 15 days old they were informed that he had hydrocephalus and would need to undergo surgery to place a ported shunt to be able to withdraw the fluid off his brain until he was old enough to withstand a full shunt surgery. At that time the doctors weren’t for sure how the hydrocephalus would affect his future mobility. Before the age of 2, Braeden had 10 surgeries/revisions done to his shunt. As he grew they noticed a delay in his ability to meet normal milestones of a child that doesn’t have hydrocephalus. It was determined by the time he was 10 months old that he had cerebral palsy. He has high muscle tone, spastic and dystonic reactions. His cerebral palsy and dystonia is maintained with oral medications. Braeden has a very active younger brother and sister, who he adores and loves playing with. A trike would mean he gets to ride a bike with his brother and friends in the neighborhood. Inclusion is something they value as a family, and are hoping this Rifton trike will allow Braeden to be included with his brother and sister and his friends in our neighborhood!
Braeden’s best quality is his smile, it will light up a room! Hes extremely outgoing and everyone is a friend to him. We really enjoy spending time in the outdoors and camping as a family. He loves going fishing and playing outside with his brother and sister. If he chooses an indoor activity you can catch him watching youtube, or watching his brother play games on their playstation.
The opportunity for activity and inclusion is so important for every child, especially those with special needs. Braeden will get his bike from generous Variety KC donors – please help other kids get the bike they need too! Donate today at varietykc.org/donate/
Meet Mia- She has been diagnosed with Hemimegalencephaly a rare neurological condition in which one-half of the brain, or one side of the brain, is abnormally larger than the other. The structure of the brain on the affected side may be markedly abnormal or show only subtle changes.
She seizes approximately 75 percent of her day, but since her hemispherotomy she has made huge strides in all her difficult areas. Those are physically, mentally, socially, and visual disabilities. Variety KC can help her Be Active, Be Social and Belong by providing the equipment she needs to be included! #varietykc . #inclusion #rare # belong #equipment