Meet the Kids – Abby!

Meet the Kids – Abby!

Abby is an active and caring young lady with a diagnosis of cerebral palsy. She uses AFO’s, or what most people call “leg braces,” to straighten her feet and help her walk better and fall less. She recently grew out of her leg braces and not eligible for insurance.

She loves playing outside with other kids, and is a very loving child with a bubbling personality and a big heart for animals. She loves making people smile and helping animals any way she can – in fact, she volunteers at a local animal shelter with her mom! 

The problem is, without her leg braces, Abby can’t do the things she loves and help out where she wants. With a heart like Abby’s, of course Variety KC wanted to step in and help. She’ll get her new braces and be back playing like before – something that gives her parents so much joy.

A big thank you to our Variety KC partners who made this happen for Abby.  If you would like to help other kids like Abby, right here in our community – donate today at www.varietykc.org/donate/

Thank you!

 

Meet the Kids – Variety KC helps David to Walk

Meet the Kids – Variety KC helps David to Walk

 

Meet David. On paper, David has chromosome 9p deletion (Alfi syndrome), scoliosis, global developmental delay, metopic craniosynostosis, persistent femoral anteversion, external tibial torsion, patellar instability, disorder of peroneal tendon. But this doesn’t define David. He is a young man who would like to be more independent through the use of a walker. This would give him more independence, the ability to chase his brother around the room, and they interact more closely. Here’s what David’s mom wants you to know:

“Inclusion is important for children that have special needs, because the more that the child is around a “typical” child the better they can developmentally grow. This is done by peer role modeling. So, when a child that is struggling with something and they see another child doing it, they can attempt to mimic it. This will help their development. Inclusion is also important for special needs children because it helps them not feel so outcast. They are able to build friendships and those friends will be there to help them and support them. Being accepted is something that every child needs, no matter where they stand developmentally.”

And remember, Inclusion doesn’t just help children with special needs, it benefits typical children. It makes them more considerate of others who might be a little different. It shows them how to be more compassionate and have more patience. Inclusion allows them to learn that everyone is different and that there is nothing wrong with that. You have to see the differences in others and see that they are a great thing!

Variety KC donors understand how important inclusion is and how a walker would support David’s desire to be included! Help David and other Variety KC Kids like David – donate today:  varietykc.org/donate/

Meet the Kids – Ethan, The Social Butterfly

Meet the Kids – Ethan, The Social Butterfly

Ethan is extremely social, but limited due to his inability to walk and talk. He is completely dependent on his mom, but is so happy and full of life. Ethan LOVES interacting with people and flashes his winning smile to all he meets! He really wants to be able to run, chase, and play with his twin sister Katy, but he isn’t able to do much physically since he is dependent on mom to move him. He has been through so many surgeries and pain in his short little life, all in an effort to allow him to use his legs – something he wants SO BADLY to use.

The goal:  Help him strengthen his legs and his bones to grow correctly. (His goal – chase his sister, filling the house with laughter). Mobility, independence, and freedom is priceless.

My son has been in a gait trainer for the last five years with problems, but the style of gait trainer led to problems due to the severity of leg crossing from Cerebral Palsy. As a result – his legs were banging and bruising, making it painful to walk. However, he’s had numerous surgeries in the last year to correct his legs and muscle tone. He had his femurs cut and re-positioned correctly, his hips were also re-positioned and put together with plates and screws. His journey has been rough. He had a baclofen pump installed, but they saw an increase in Ethan‘s seizures last year. Seizures caused his stitches to rupture four times, the last time resulting in another surgery to try to fix the stitches. Then he developed bacterial meningitis and had to have surgery again in August to have the pump removed. In January of 2019, Ethan had the plates and screws removed because they caused him so much pain.

His MRIs and EEGs indicate abnormality in the brain’s left hemisphere, causing seizures. Ethan is currently on medications to control the seizures at max doses, as well as his rescue medication –  he is too medication resistant for them to do much good. His family was  informed it was time to consider Ethan‘s “quality of life.”  In fact, when his Neurologist looked at the EEG, he was astonished Ethan wasn’t in a state of constant seizures and is flabbergasted Ethan CAN do the things he CAN do. But he does it –  and he does it all with a laugh and a smile. He shows everyone that no matter WHAT the odds are against you, no one can say for certain what you can and can’t do.

And what Ethan wants to do is try standing/walking with a new style of gait trainer on his new and improved legs….but he isn’t eligible for insurance help on a new gait trainer.

Ethan is giving up and neither are Variety KC’s generous donors!  Let’s get Ethan the gait trainer he needs and see just how far this amazing young man can go!  Donate today at varietykc.org/donate/

Thank you!

Meet the Kids – Adelaide!

Meet the Kids – Adelaide!

Adelaide (Addie) was born premature, at 26 weeks, and had a severe brain bleed within her first week of life. She was later diagnosed with cerebral palsy and a seizure disorder. The need: Addie is wheelchair dependent and a handicap accessible van would allow our family to continue going out in the community together and help Addie get to/from her medical appointments and therapies safely. Read her amazing story as told by her mom:

“Our family has grown rapidly in the last six years…we are a busy family of six, including an almost 8-year-old, two 6-year-olds, and a 5-year-old. In 2012, they adopted their eldest son, Stevie, through the foster care system. The week after we finalized his adoption, we received a shocking call from the state. His biological mother had just given birth to twins. They were born premature at 26 weeks and weighed less than 4 pounds combined. They had no names and their future was uncertain. We started visiting these tiny humans in the NICU. “Baby girl” was bigger than her brother, as she weighed a fierce 2 lbs., 1 oz. Sadly, she had a severe brain bleed within the first week of life, which resulted in hydrocephalus and the need for a shunt. Thankfully, she proved to be a FIGHTER. In December 2012, while the twins were still in the hospital, we found out I was pregnant. We had tried for years, so the timing was interesting to say the least. In January 2013, we got to bring the twins home as foster placements. We were so nervous, as Stevie was not quite two, “baby boy” was on oxygen, “baby girl” had a scary incision on her head, and I was pregnant. By God’s grace the kids thrived and we, the parents, somehow survived. In May 2013, we were blessed by finalizing the twins’ adoptions. They officially had the names they so deserved, Drake Joseph McDonald and Adelaide (Addie) Harper McDonald. Then little sister, Piper Quinn, joined the crew in August. Shortly after Piper was born, Addie started having infantile spasms, a type of seizure disorder. This was so heartbreaking, because she had already been through so much.

The next few months and years were a whirlwind. Addie has had 15+ surgeries in her six years of life. She was diagnosed with cerebral palsy and is wheelchair dependent. Despite these difficulties, she is the happiest little girl and so loved by her family (and everyone else who meets her). She is mostly non-verbal, but still more funny and ornery than you can imagine. Addie is a JOY and continues to amaze as she progresses and learns new things. However, as she continues to grow, we face new challenges. This girl that could once be held in one hand, is getting harder to lift safely. We are in the process of adapting our home and could use help raising money for a handicap accessible van. The cost of adapting a vehicle is expensive and not covered by insurance. Having a van like this will allow us to continue going to community activities as a family and to get Addie to/from her appointments and therapies safely. I have gone part-time at my job, in order to take Addie to her many appointments and be with her and the other kids before/after school. This loss of income has been hard, due to our already tight budget and financial obligations. We currently cannot afford to convert a van on our own. Any help will be so appreciated!”

Addie’s family has an abundance of love and is so dedicated to their kiddos and the special needs they face. Their optimism is so impressive and Variety KC partners were eager to help them! If you’re moved to help Addie’s family and others like them – please donate today – www.varietykc.org/donate/

Shop Amazon Smile for Variety KC

Shop Amazon Smile for Variety KC

When you sign up at Amazon Smile (https://smile.amazon.com) 5% of your purchases will go to a not-for-profit of your choosing. Please consider making that not-for-profit, Variety KC!

When you can’t walk or talk, how do you interact with your community? Variety Children’s Charity of Greater Kansas City exists to solve this problem for children with physical and cognitive disabilities – right here in the Kansas City area.
Help us to provide adaptive equipment and opportunities for activity and inclusion simply by shopping on Amazon!  Join us in Helping Every Kid, Be Active, Be Social and Belong!
Meet the Kids -Zach!

Meet the Kids -Zach!

Everybody is different – when you look at Zach, you see the difference. He is 17-years old and 47 inches tall, about the same height as an average 2nd grader. His head and trunk are the same size as an average teen, but his arms and legs are short.

People stare, point, take pictures, but he understands he looks different. Zach knows that someone did not teach them not to make fun of someone who looks different. So, he educates. He goes to different schools and teaches kids that it is okay to be different. That everyone deserves to be included, regardless of size of whatever their difference is. Once you get past his size, you see how awesome he is.

Zach has enough obstacles to overcome in life. He has to fit in a world not made for short people. Whether it be public restrooms, ATMs, fast food counters, he has to adjust. We just want to try and make his life a little easier to participate with all kids his age. He leaves a positive image where ever he goes. He doesn’t want to remembered for his size, he likes to meet people, educate, get them used to seeing that everyone is different but that everyone is also the same. Zach believes that his success will not be based on his height and that his height will not define him. He wants kids and adults, to think about what they are going to say before they say it. Will it hurt, do you want it said to you, do you want to be treated that way?

To help Zach keep up with his peers, Variety KC provided a mini-Segway to enhance his mobility. It helps him get from the locker room to the football field quickly (he’s the manager for his high school team). It will be also be important for his use on campus next year! V

Help us to help other inclusion warriors like Zach!  Donate today at www.VarietyKC.org!