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!
