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!
Feb 24, 2022 | Transportation
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
Jan 19, 2022 | Transportation
| Rose is a young woman with a diagnosis of Ehlers Danlos, a genetic connective tissue condition. The recent inability to walk or even sit up unassisted is such a dramatic decline from Rose’s previous level and this is forcing her family to make some necessary changes, and they need some help. |
| Their goal is to get Rose home from rehab, focus on getting her to the next stage of her medical care, and get her back to having the best life she can have. The most pressing need is to get an accessible van to get Rose home from rehab and possibly to travel out of state to see specialists who may be able to help her. We need something reliable and reasonably comfortable. Rose’s mom has the same genetic condition as Rose and is somewhat limited in her physical abilities. Her dad will be her primary care giver and recently resigned from his position as a social services director at a skilled nursing facility in order to provide care. They need a van which will allow Rose’s mom to assist her as well, this includes features such as power ramps and power latches to secure the wheelchair.
Rose has always been very active in volunteering and even won an award for being one of the students in her whole middle school with the most volunteer hours. Rose has worked with the YMCA challenger special needs sports program for years. Rose has been very active with Youth Volunteer Corps, a city-wide organization for teens to complete service projects in many aspects of need. Rose was selected to be on the advisory board for the Youth Volunteer Corps for the third year in a row. Her favorite volunteer activities involve assisting those that are disabled, children and the elderly. Rose’s story is complicated and difficult. However Rose is a tremendously positive and hopeful person. She knows she will continue to make a positive impact on the world. She is determined to get better and envisions a life one day in profession where she helps people and plans to have a family of her own. While we will continue our journey to get answers, we aren’t waiting for the future for Rose to begin living her best life.
Variety KC partners and donors understand that transportation is the key to getting consistent care and social opportunities. Won’t you join us in making this need a reality for Rose and her family? Help Rose to pursue her best life and dream of helping others, donate today at www.varietykc.org/donate |
Jun 30, 2020 | Transportation
| Rett syndrome is like having Parkinson’s, Autism, Cerebral Palsy, Epilepsy, Breathing abnormalities, and Anxiety all wrapped up in one little girl. Can you imagine? Here’s Macy’s story from her parents:
“Macy was born happy, healthy and ready to bring joy to everyone on January 9, 2015. She smiled, cooed, rolled over and did exactly every milestone on time, until 6 months of age. She began to fall behind, she couldn’t sit up on her own, crawl, kneel, or even pull to stand, not because she didn’t try, but because her body wouldn’t let her. Our family watched as children ran and played in different areas as Macy watched. Our hearts broke to see this. June 20th, 2016 we had our answer as to why this was occurring for our daughter, she was diagnosed with Rett syndrome. We were shattered, devastated beyond belief and gut punched! HOW and WHY we asked time and time again. It took awhile and we went through a grieving process of the child we thought we would raise to come to where we feel and stand now.
Macy blessed us, she changed us, she grew us in more areas than we knew were possible! We began a yearly fundraiser for the community to learn more about Rett syndrome and how they can welcome Macy and the other children in with inclusion. We raise funds for research as the research being done will not only help the diagnosis of Rett syndrome but open doors to Parkinson’s, brain trauma, autism, and many other neurological disorders. She began therapy and preschool at Lee Ann Britain and our family worked hard to make sure Macy was included and was able to play with other children. Macy was one of the first children to get in the harness system and be on a play kitchen level with others. I cried, i’ll never forget this moment! I cry as I write it! I as Macy‘s mom have gone on to work for the foundation Rettsyndrome.org as the Family and Community Engagement Manager. Macy guided me into helping other families navigate their way through this diagnosis but also navigate this new world of inclusion and how to lead this direction. She gave us the strength and guidance without speaking a single word, that is beyond overcoming adversity, that is living it!
As Macy grows and becomes heavier for lifting we struggle with movement and strength to lift her in and out of her car seat as well as loading and unloading her wheelchair multiple times daily. We counted one Friday, 12 times! Twelve times I lifted her in and out of the car seat, all 40 lbs of heavy weight, 12 times I lifted her 100 lb + wheelchair in and out of the van, that is 24 times in one day of lifting more weight than anyone normally does all while trying to be safe and not hurt her or myself. Until I did, I hurt my shoulder, I had surgery and am still recovering to this very day because a parent like myself doesn’t get to stop. A parent’s healing is always elongated as our children still need care as they aren’t able to care for themselves. This is why a gift of a wheelchair lift for a van would be priceless to our family! We could get back to being on the move, going to parks, out to dinner, going to a Royals game, to therapies and Dr. visits all something a family should be able to do with some ease.
Macy has the ability to bring such joy in the room. Her expressive eyes and loud giggle surround you before you can say BOO! She loves to be scared and thinks it’s hilarious to hear you sneeze! She belly laughs and brings you to a rolling belly laugh with the flash of an eye. She loves to hear laughing and wouldn’t miss a party, such a social butterfly she is. She loves The Loud House cartoon, watching the Royals games on her grandpas lap, and going to school to swim! My favorite quality is the strength of Macy. She uses not just physical strength but the internal strength and grit to keep moving forward every single day with a smile on her face. We are grateful for your consideration and inclusion you drive in the community!”
Macy – Variety partners want to help! It’s important to keep all kids and their caregivers safe – won’t you help us make this wheelchair lift a possibility for Macy and her family? Donate today at www.varietykc.org/donate
Thank you!
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Mar 3, 2020 | Inclusion, Transportation
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!
Feb 14, 2020 | Go Baby Go!, Inclusion, Meet the Kids, Transportation
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!
