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!
Sienna had a brain injury before she was born and she’s had a difficult journey. It started with seizures just before she was the age of one. She is not able to feed herself or talk. She’s dependent on an adult to feed and move her. Still, Sienna has learned so much already! She’s learning to work with an assisted technology device to communicate. She’s beginning to take a few steps. And, she’s taking her nutrition by mouth and no longer dependent on a feeding tube. (She’s also being potty trained.) Sienna is a super hard worker and will only continue to do great things!
Sienna’s mode of transportation is her wheelchair. At the age of eight, she has grown too big for her parents to lift her in and out of the vehicle safely. Outings are limited and well thought through in order to get Sienna in and out of the vehicle. With a wheelchair van, Sienna would be able to get out more, to attend sporting events for her siblings, go to family fun outings and be more mobile in her world.
Inclusion for Sienna requires a wheelchair van to transport both Sienna and her wheelchair. With an adaptive van, Sienna would be able to socialize with her family, friends, and community – and explore her world beyond her house.
Variety KC partners and donors want to help Sienna get out and experience the world. We believe every kid should have the chance to Be Active, Be Social and Belong! If you believe that too – please donate today at varietykc.org/donate/ Thank you!