McCoy was diagnosed with these disabilities: 1q43-44 Deletion Syndrome, Complete Agenesis of the Corpus Callosum, Microcephaly, and Global Delays. However, McCoy’s conditions don’t begin to describe the determined young man you see here! Just read what his mom has to say:
McCoy is the most determined person I have ever had the pleasure of meeting. From the moment he was born he has had to work very hard to learn skills like sucking, swallowing, smiling, reaching out, grasping items, sitting up, and many others skills that come so easily to most of us. Although he is non-verbal, it is clear by simply looking into his smiling eyes that he has so much to say! It is a real struggle to see your child full of personality, but not have a voice or physical ability to convey his needs, feelings and opinions. Having a way for him to express things like wanting a drink of milk, or if he is ready to get our of his stander, would also be giving him the gift of independence. If eyes could speak his would be that of a million words. Providing him a tool like Touch Chat with a unit that is easy to handle and use like the iPad Mini with keyguard could open up his world to so much possibility!
Variety KC wants to help McCoy express those million words and he is getting his communication device. Every child needs a voice….a way to connect…to express wants and needs. Won’t you help us to help others like McCoy? Please 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/
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.
From the Variety KC mailbox:
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/