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!
The following letter from Kennedy’s dad highlights one of the biggest challenges facing caregivers – safety when transferring. As children grow, the inability to safely move them can limit the number of family members and friends who would otherwise be willing to help. Caregivers who get injured by lifting larger children can also be taken out of commission.
“Kennedy is a very happy 11-year-old little boy who loves reading, playing tetherball, going for walks, riding his tricycle, teddy grahams, and going to school.
Since arriving early to this world at 28 weeks, he has always proven everyone wrong and done it with the biggest smile on his face. Although he’s non-verbal and restricted to a wheelchair (and the constant one-arm army crawl to get his favorite books), he’s learned to sign for some of his basic needs and gives the random, “Hey” to anyone that passes by.
My wife and I are very fortunate to have key people in our life that help in times of need to help with Kennedy, but as he continues to grow, it is becoming more and more challenging for many of those around him to tend to his daily needs. We’ve been able to make some adaptations to our home including a stair lift and mobility equipment on each floor. An area quickly becoming a greater challenge is during transport. Loading a 75-pound (and growing child) from wheelchair to car and car back to chair is a huge challenge for Kennedy’s mom, Kennedy’s grandparents, and myself at times. The opportunity to add a Turney seat to our current Honda minivan will not only give Kennedy’s caregivers a more feasible solution, but a safer one. I greatly appreciate your consideration of funding for this needed piece of equipment for our special little boy.”
Variety KC friends and partners understand this great need and made sure Kennedy’s family received the equipment they needed. We have several more families who would benefit from this same equipment, if this speaks to your heart, please donate today at www.varietykc.org/donate
Jonathan was born at 24 weeks and spent his first 6 months in the hospital. Because of his prematurity, he was diagnosed with periventricular leukomalacia (PVL), which resulted in him also being diagnosed with cerebral palsy, cortical vision impairment and feeding issues that require a GJ tube. On the GMFCS scale that ranks severity of cerebral palsy (1-5), Jonathan is a 5. He will always rely on a wheelchair for mobility, full lift and positioning by a caregiver. Please read what Jonathan’s mom has to share:
“As a parent of a child with special needs, you pray that your child feels loved and included when he’s away from you. One of the hardest things to do as a parent is trust your child with another individual and it’s even more difficult when your child has special needs, is non-verbal and relies upon others for everything. Letting go of that need to be there to help him through everything has been difficult this first year of Kindergarten, but I’m trying. My biggest desire for my child is for him to know he’s loved by his Creator, by his family and by his peers. Part of this includes him feeling comfortable and fitting in.
Typically developing children his age are usually able to climb into their own car seats and in some cases, buckle themselves in. For Jonathan, it’s not. When I load Jonathan into my van, he’s a full lift into a 5 point harness car seat into the van. While it’s not the most important reason to require a wheelchair accessible vehicle, the idea of not having his peers see him handled like a toddler or infant is important. There’s also the safety consideration for Jonathan. Right now, he weighs about 40lbs. As he’s gotten bigger, I’ve been able to adjust to handling him, but it’s getting trickier with his weight gain (about 5 lbs in the last 6 months) and his feeding tube and venting tube lines. He is fed about 20 hours per day, so he is almost always hooked up. I’m consistently worried that I’m going to catch his feeding tube extension on his chair. It’s happened a few times already. If his tube comes out or bursts from tugging, it requires a trip to the downtown hospital ASAP.
The practical consideration with acquiring a wheelchair accessible van is that Jonathan’s chair will soon outgrow our van. We have less than half an inch left in the rear of a our van once Jonathan’s wheelchair is placed inside. As Jonathan grows bigger, his wheelchair will widen as well. It will be extremely difficult to transport him, along with his two younger brothers if we do not have space for his chair.
The reality for our family is this: as Jonathan grows, our vehicle will have to change. Our current van is 15 years old and becoming more tired. We are hoping that we can keep it going for 6-12 more months. We simply can not afford a wheelchair accessible vehicle without financial assistance from organizations like yours. To have a reliable vehicle that could safely transport all of our children would be life-changing for us. We understand that this is a large thing to ask for, but I’ve also resisted applying for assistance from Variety in the past because I’ve known that this would be a large, pressing need for us in the future.
Jonathan is a happy child who loves to interact with his peers. He has the sweetest giggle that is infectious because you never know what’s going to set off a giggle-fest. He loves music, being silly, taking walks outside and swimming. He loves to go to the park, take walks and simple things, like going to the store with mom. My favorite of Jonathan’s qualities is his joy in life. His smile can light up any room.”
When Variety KC received this letter, we knew we had to help – and we knew that Variety partners would want to help Johnathan! Having a safe vehicle that fits children and equipment is an absolute must! Transportation means access to medical services, to community involvement, and to inclusion! Help us to help Johnathan by donating in his name today – www.varietykc.org/donate/
Thank you for being part of the #inclusionrevolution!
At the age of two and a half, little Aria has already endured a rough journey with many obstacles – cerebral palsy, hydrocephalus, severe developmental delay, transient altered mental status, hypotonia, and hearing loss.
Having a ride on car that would fit her needs would be amazing for so many reasons. Hopefully she would be able to use something fun and age appropriate without all the difficulties she encounters with some equipment. It would give her such a sense of independence and accomplishment – building self-confidence. Simply being able to participate with others in a fun activity would be awesome!
Variety KC thinks to too! And Aria received a GoBabyGo car specifically designed for her! Don’t all kids deserve to Be Active, Be Social, and Belong? Donate today at VarietyKC.org/donate/ Thank you!