Aug 24, 2022 | Transportation
Virginia has been diagnosed with Spina Bifida (lipomyelomeningocele), Neurogenic Bowel and Bladder, Club foot, dislocation of Left hip, diminished feeling in the left leg below the knee, diminished feeling in the right leg below the ankle, drop foot on right foot, hammer toes on left foot. And this doesn’t stop her! Virginia is a 15-year-old girl who is very into art, video games, cooking, and music… and she loves her family and pets. She hopes to become a culinary specialist or even a forensic scientist. She has mastered the art of getting around with the wheelchair she has and doesn’t let her lack of mobility keep her from trying new things. She doesn’t let it bother her if anyone looks at her in a sideways manner.
Virginia’s story in her mother’s words: My pregnancy with Virginia had no complications and there was no indication that there was any anomaly that would affect her life. After she was born via c-section I noticed that she had a hole at the small of her back. She was immediately seen, and a scan was done to see what lay beneath the hole.A tethered spinal cord was diagnosed at two days old. She had surgery at 9 months old for a first attempt to untether her cord. The surgery was not a complete success and resulted in the diminished feeling in her left leg and the club foot and hammer toes. She had surgery in third grade to try to correct the club foot, but it was not successful. She was then prescribed AFO’s to help correct her foot position. Around this same time her Neurogenic bowel and bladder came into play as she was having frequent bladder accidents and lots of embarrassment at school and in public.
The summer between her 7th and 8th grade year she had gotten a really bad UTI and was hospitalized, and it was at that time that she learned how to self-catheterize and she has not had a bladder accident since that time. In the spring of her 8th grade year, she had her second untethering surgery. It was at this time that she developed loss of sensation on her right leg below the ankle and complicating her mobility. She had to be fitted with knee high AFO’s for both legs and started physical therapy. During the last Christmas break, she did not keep up with the regime of her physical therapy and her mobility became markedly worse. Her left hip also became dislocated. She can only walk now with the assistance of a walker, and it is not an easy task for her now. She has been in a rental wheelchair since the middle of January of this year for anything that has her going outside of our house.
The wheelchair we currently have is not easy to transport in my car or on the school bus as it does not have the anchors needed to tether it down securely. Since it won’t fit in my vehicle, we have had to rely on her grandparents to help with transporting the wheelchair. She also has a 504 plan that allows her to have alternating passing periods to keep her from being stuck in the large crowds during passing periods at her school.
Transportation challenges are a huge barrier to inclusion and Virginia has a couple of challenges. First, her wheelchair isn’t safe for riding in a school bus or her mother’s car and second, she has to rely on her grandparents for help in transporting her current wheelchair. What she needs is a fitted wheelchair that is safer, more easily transferred, and belongs to her (not rented). Variety KC donors believe in eliminating barriers to inclusion and with your help, Virginia will get her new wheelchair. Please donate today at www.varietykc.org/donate. Thank you so much!
Sep 12, 2019 | Inclusion
Bethany is seven-years-old and in the second grade. At the age of one, Bethany suffered a major medical event called a brain arteriovenous malformation – or AVM -which left her as an incomplete quadriplegic. She went through years of rehab to regain control of her head, arms and some hand function. Bethany overcomes some type of adversity every day, whether its doing school work, feeding herself, and playing with friends. Somehow she always manages to complete these tasks with a smile on her face. Bethany has a very strong personality and wants to be independent as much as possible and also likes to help others when she can. Her big thing now is learning to do dishes and clean the house without any help.
Bethany received a new wheelchair a little over a year ago and it is already in need of repairs and upgrades due to normal growth and wear and tear. The repairs will help her with everyday function, making her more comfortable and more importantly – keeping her body supported while she’s seated in her chair.
Here’s what Bethany’s mom has to say, “Just because a child has special needs does not mean they do not want to participate in activities or should be left out. My daughter wants to do everything all other kids her age like to do, sometimes its just a little harder for her to do them and takes a little extra time to complete them. Being able to participate means everything to kids with disabilities, it provides self-confidence and lets the child know they can play and accomplish things just like anyone else regardless of their disability. Inclusion to me means getting my daughter to be able to participate in as many “normal” activities as possible. To be able to go to a playground and play with her friends and not be pushed aside because she is in a wheelchair.”
Variety KC’s generous donors want Bethany to be able to participate wherever she wants and she’ll be getting those wheelchair updates. Please help Variety KC to help kids like Bethany to Be Active, Be Social and Belong. Donate today at https://varietykc.org/donate/
May 7, 2019 | Meet the Kids
Like a lot of 12-year-old boys, Vincent loves basketball! His dream is actually to play on a team, but a diagnosis of cerebral palsy and the lack of equipment has kept him on the sidelines. A “Thunder Adjustable Wheelchair” would allow Vincent to get out on the court – and that’s exactly what generous Variety KC donors wanted for him! Let’s get every child off the bench and into the game! Join us in helping to make dreams come true for kids with special needs here in Kansas City. Donate today at https://varietykc.org/donate/
May 3, 2019 | Inclusion, Meet the Kids
Kaeson at the Royals!Kaeson’s parents have to be on alert at all times! Why? Because seven-year-old Kaeson was diagnosed with AHC – Alternating Hemiplegia of Childhood, Dystonia, Epilepsy and several other developmental conditions. The biggest challenge is when Kaeson has an episode, going suddenly limp and unresponsive. These episodes can last for five days! The safest thing for him is to be securely fastened into his stroller, but he’s recently outgrown that. He is ready for a special adaptive wheelchair with all the necessary safely features. It’s an immediate need, one that would allow him to get safely to and from doctor appointments and out in the community, engaging with family and neighbors. No child should be at risk of a serious injury due to the lack of safe and proper equipment – Variety KC donors understand that and Kaeson will receive the requested help for his wheelchair. Help others like Kaeson to not only Be Active, Be Social and Belong….but Be Safe as well! Donate today https://varietykc.org/donate/
UPDATE: Variety received a wonderful note from Kaeson’s Mom telling us how much Kaeson is enjoying his new wheelchair…
“Good Morning! We received Kaeson’s wheelchair last Thursday, which was a lot earlier than we thought it was going to be! I’ve attached a few photos. The first is from the first night he got it. I just love it, because you can just see how happy and excited he was to have it! A few days ago my mom gave us Royal tickets. Normally I would have said no, but with the chair we felt comfortable saying yes! So my two Little’s were able to go to their very first Royals game! They LOVED it! They actually loved it so much we stayed until the bottom of the 8th, on a school night! 😉 lol! Guest services were so wonderful and let us exchange our tickets for handicap seats which was so awesome too! We had planned to just stand and walk around since we had the wheelchair! There was a guy there helping us with our seats that worked there who was so nice! When he heard it was the kids first time to a game, he bought the kids meals and drinks to celebrate their first time to the park! Totally unexpected and so generous. We had an amazing night, the kids had so much fun, and we felt pretty spoiled!”
So thank you! Without the chair we would have missed out on such an amazing and fun experience! I know Kaeson is loving it!
Natasha
