Isaiah was diagnosed with Duchene Muscular Dystrophy. The symptom of muscle weakness usually begins around the age of four in boys and worsens quickly. Typically muscle loss occurs first in the thighs and pelvis followed by those of the arms. This can result in trouble standing up.
Isaiah faces challenges when walking long distances. Over the course of the day at school or while with our family, Isaiah wears down physically and mentally. The SmartDrive scooter will vastly improves Isaiah’s quality of life. The scooter encourages good posture and also allows Isaiah independence and saves his energy during a day with a lot of walking.
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
Savannah was diagnosed with Autism at the age of three and is non-verbal. She has spastic dystonic cerebral palsy which makes it difficult for her to walk and perform daily living skills. Savannah also has a seizure disorder called hydrocephalus which is managed by a VP shunt and a feeding tube for nutrition. Here is Savannah’s story as told by her mother.
“Savannah was a 25-weeker, weighed 1 pound 4 ounces and almost died of renal failure two months after she was born, but by the power of prayer and the grace of God, she survived. Since then, she’s grown up to be a beautiful young lady with the strength of a hundred men and a smile that could melt your heart. Although Savannah can’t talk, she’s one heck of a smart cookie and uses her iPad to communicate on a daily basis (which she received from Variety KC several years back). She’s overcome so many difficulties with people not accepting her or believing in her because of her disability, but that hasn’t stopped her from pushing on and living the best life with the help us advocating for her.”
Early this month the family moved into a ranch style home for Savannah. It has an open floor plan for her to move around freely with the use of her wheelchair. There is just one problem, and it’s a deal-breaker. There are steps leading into the house from the front door and the garage. The family tried a ramp from the local big box store, but the incline was too steep and Savannah and her mom nearly fell down it. In order to safely get in and out of the house, a custom wheelchair ramp is needed. Without a safe ramp, we know what happens – Savannah will be stuck at home and not able to participate in all life offers!
Variety KC donors have such big hearts and want Savannah to be able to go anywhere she wants to go and that means supplying her family with a safe ramp! Unfortunately, these types of barriers keep too many kids at home. Please help use to make sure all kids are able to go out and come home safely. Donate for ramps today at https://varietykc.org/donate/
A letter from a proud Variety KC Mom!
“Our daughter, Lucy, is a smart, happy, and active toddler who happens to have spina bifida. While in utero, nerves in her spinal cord were damaged around the L5 vertebra. She also has bowel and bladder dysfunction. She works a little harder to meet gross motor milestones, but she is otherwise a pretty typical toddler. She started walking at 19 months and works hard weekly to meet other gross motor milestones.
Lucy was diagnosed in utero at 21 weeks with spina bifida-myelomenigocele. Her lesion is at the L5 vertebra to the S3 vertebra. This disability impacts her bowel and bladder function and her ability to walk at a typical age. We call her a twice born miracle. She was operated on at Children’s Mercy Hospital (the 5th ever at this hospital) in utero at 26 weeks to have her back closed. She was partially delivered by an amazing team of doctors and placed back in utero after having her surgery. She was born at 33 weeks and her back was totally healed. She spent 14 quick days in the NICU and has been doing well ever since. She has received physical therapy since birth. She sat at 6 months, crawled at 10 months, and walked at 19 months. She received weekly therapy and has always worked very hard to meet milestones. She has bowel and bladder dysfunction which is due to her condition. She was sick frequently in her first year of life and has frequent UTIs. She has been very healthy as of lately.
Having this equipment will give Lucy more opportunity to improve her gross motor skills and keep up with her sisters and family while we are being active as a family. She will be able to exercise while having fun and gaining strength. She will love having this equipment as she LOVES using it at therapy. Lucy is a happy and active child. She has a big smile, loves to be funny, likes to do whatever her older sisters are doing, and loves to imitate what she sees. She loves being active, loves to do everything herself “I walk,” “I do it,” she loves puppies, her soft blankets, loves her sisters, her parents, grandparents, and caregivers.”
Lucy’s family is making a simple request – much needed equipment that isn’t covered by insurance, but could help Lucy gain strength and get more enjoyment out of life. Variety donors get that! We step in when other resources aren’t available. Help us to help Lucy and every child like her. Shouldn’t every kid have the chance to Be Active, Be Social and Belong? Donate today varietykc.org/donate/
For the first time ever, Body Weight Support technology has been moved out of the therapy gym and into the classroom. The “Harness School” Cafe is an innovative concept that allows middle school students who use wheelchairs and walkers a chance to stand upright with their hands free to fully participate in their school coffee shop. This allows them to practice job skills such as taking orders and serving coffee, integrate real-world math skills by operating a cash register, and socialize with their peers at eye level for the first time ever, all while gaining the therapeutic benefits of standing and moving on their own.
For an investment of $10,000 each, two Variety KC “Harness Cafés” have been built inside middle schools in the Liberty, Missouri, school district. The cafés sell and serve coffee, hot chocolate, and snacks while providing a life skills environment for students as part of the “Cooking to Learn” curriculum. Each year, students with special needs work in the skills class alongside their non-disabled peers. But before the implementation of these life-changing “Harness Cafes,” students with physical disabilities couldn’t take full advantage of the learning, movement, and social opportunities working in the cafes. The harness will be used by 20 kids with a variety of special needs who work alongside 40 abled-bodied peers. This cafe will serve new students each year and the high school is already considering duplicating this program. The harness can be used for at least 20 years.
As one student said, “Before the harness, greeter was the only job I could have. My wheelchair was below the counter, so I couldn’t make drinks or use the cash register. When I strap into the harness, it frees my hands and since it runs on a track – I can move all around the care. Now I can work just like my friends.”
Dr. Kendra Gagnon, the physical therapist who helped Variety KC plan and design the cafés, says the system does more than facilitate movement for students who usually rely on assistive devices like wheelchairs or walkers for mobility. It gives students a chance to experience getting out of their wheelchairs and interacting with “customers” alongside their peers – upright, hands-free, and eye level. In an upright position, eye-to-eye with their peers, all students learn what’s possible – disabilities disappear, and new relationships are engaged and formed. Variety KC is a leader of inclusion in schools and communities, sharing innovative ways to include ALL kids.
Money raised in the cafés makes the investment sustainable. The most exciting outcome. As a supplier to the cafés, Danny O’Neill, the owner of the local Roasterie coffee company, attended the grand openings. Seeing the skills training enabled by the harness systems, O’Neill was inspired to go back to his own businesses to see where he could implement the system and provide jobs for local graduates who would benefit from this system.
Gagnon says, “My hope is that one day this system will be like a uniform. The employee would wake up, get dressed and put on the vest that they will later attach to the harness system at work. It will be seamless, needing no additional help from a co-worker or supervisor. How empowering and life-changing is that?”
Want to more? Contact VarietyKC@gmail.com
Let’s All Play!
We’re attaching an Inclusive Playground Guide for you to use if planning a playground, inclusive outdoor/indoor play area or other community gathering space. We’ve compiled this information while building seven inclusive playgrounds, the Variety KC Zoo’s exploration play area, multiple ball fields, sensory areas, and various inclusive additions to facilities around the Kansas City area.
During our journey to make this the most inclusive community possible, we discovered that what builders, playground vendors, and designers told us was “inclusive” – wasn’t. And, that the greatest source for inclusive needs comes from the kids and parents themselves. That’s what we’ve compiled here, a little “tips sheet” to help you to design the most inclusive initiative possible – a place for all kids and all families to gather.
If you have any questions, we are here to help – good luck with your projects, we look forward to seeing them!
Inclusive Playground Guide – Download.
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!!,