Meet the Kids – Olivia!

Meet the Kids – Olivia!

 

Sweet and Sassy little Olivia has a lot to say – just can’t say it!

“We were blessed to meet our little Liv at two days old when she was in the NICU at Children’s Mercy, we were blessed to be able to fully adopted her 13 months later.  Liv spent seven weeks in the NICU where she struggled with feeding, maintaining her core temp, breathing and a few other life threatening conditions. Coming home on oxygen and continuous G-tube feed, little Liv fought hard and within a few short months she was able to only need PRN oxygen and only need continuous feeds over night. She had several inpatient stays the first few years of her life, it felt like at least once a month we were at Children’s Mercy for almost a week.

The various hospital stays always left us with something new to overcome. Whether that would be a surgery, new diagnosis, and one time sending us home palliative care. Liv needed open heart surgery in June, 2019 to repair one of her two congenital heart defects. Since then, Liv has had so much more energy and more lively, but the difficult part is that Liv is non- verbal. When she is upset, in pain, happy, hungry, sleepy, or just wants some quiet time – she is unable to communicate that to us, she school team, hospital staff, anyone. So being able to have Liv communicate to us would mean the world and much more.

It’s hard to describe as a mother feeling so helpless not being able to figure out what your child needs because they are unable to communicate their wants and needs. Our family truly believes a communication device will change all of our lives and caring for Liv!”

Variety donors understand the importance of giving a child a voice!  Olivia will get hers!   Help us to ensure all kids have a way to communicate, donate today at VarietyKC.org/donate

Thank you so much!

 

 

One to Watch – Meet Reece!

One to Watch – Meet Reece!

 

He founded a not-for-profit making costumers for kids in wheelchairs – he plays wheelchair rugby – and he speaks at conventions.  (He’s still in High School!)

Reese was diagnosed with neuroblastoma, a childhood cancer at the age of two months. The tumor was in his neck, shoulder, chest, liver, lung and was wrapped around his spinal cord in his neck. The tumor in his spinal cord ended up growing and crushing his spinal cord causing him to be in a wheelchair. Reese did go though 8 rounds of chemo, multiple surgeries and was cancer free before his first birthday. Reese has always worked hard to overcome his disability. He inspires others to help by helping create a 501(c)3 non-profit called “Walkin’ & Rollin’ Costumes.” This organization helps build costumes for kids in walkers and wheelchairs all over the nation, free of charge to the families. He helps design and build the costumes as well as lead teams of people to build the costumes. He even helped build the Monster Truck wheelchair costume for Delany that was sponsored by Variety KC.

Reese first started playing wheelchair rugby about 4-5 years ago and immediately fell in love with the sport. Two years ago, he joined the wheelchair rugby team, KC Revolution. This team has been an enormous help to Reese by allowing him to spend time with other independent adults in wheelchairs. Last year, when Reese had a spinal fusion surgery, his rugby team was there in the hospital room supporting him. They have been by his side as he has gone through rehabilitation to get back to the sport he loves. While he currently is on restricted play by his surgeon, they expect him to be back on the court with his team by the start of the season in the fall. Reese has been using his down time to train on his own, pushing in his wheelchair 5-7 miles a day, building up his strength for the fall. He still attends practice with his team and trains with them, but isn’t allowed to hit anyone in his wheelchair until the surgeon gives the ok.

Reese is a very kind and caring individual. He looks out for others all the time. He loves to cosplay and his favorite is Ant-Man with his wheelchair costume being Ant-onio Banderas. He attends charities as Ant-Man with other superheroes to meet with kids. At comicons, he helps promote Walkin’ & Rollin’ Costumes, a non-profit that builds costumes for kids in walkers and wheelchairs all over the nation for free. He speaks in presentations, and helps design, build and reveal the costumes to kids at these conventions. I have always loved working with Reese to help build these costumes. Reese is becoming quite the engineer in his designs as well. He is attending Olathe Northwest High School in the fall as part of their 21st Century Program focusing on Engineering. His background with building wheelchair costumes will surely come in handy.

Meet the Kids – Easton!

Meet the Kids – Easton!

You’ve just gotta love a kid whose best friends are stuffed snakes and his big sister!  Here’s the family’s story:

“Easton has a smile that brings smiles, warmth, and love to all those around him. He finds the simplest things in life interesting and worthwhile. Easton is two and half years old and was diagnosed almost a year ago with autism spectrum disorder and global developmental delays; Easton is non-verbal. Since his diagnosis, Easton has been receiving speech and occupational therapy services from an in-network provider almost an hour from our home. We make multiple trips per week (1 hour each way) to get him these services. With the transportation costs, time I must take away from work, and the in-network cap of 20 speech visits per year (Easton receives 3-4 a week), my husband and I spend a significant amount of our income to provide our son the services he desperately needs. Easton has also been on an ABA therapy waitlist for almost 8 months. With our hope of finding Easton a BCBA anytime soon, my husband and I are looking into trying to hire a RBT to work with Easton in the home. Easton’s speech therapist has strongly urged us to purchase an AAC device. Easton trialed another child’s device and responded very positively to being shown how to use it. Within two sessions, he had already mastered pressing the “help” selection. After seeing his face light up and the smile on his face, I knew we needed to do everything we could to obtain a device of his own. A device to give him a voice in his own life; a device that will allow him the ability to say, “I love you too, Mom.” Unfortunately with all the above listed expenses, in addition to our four year old daughter’s medical needs, we cannot to afford to make up the difference that the insurance company will not pay for.

Our daughter Emery also has autism spectrum disorder, as well as apraxia of speech. Emery has also been receiving extensive speech and occupational therapy services for the last two years. Due to our constant battle with insurance companies, we uprooted our daily life to move into a school district that could provide the appropriate IEP services. This move has also affected our family financial situation. I know there are so many families out there experiencing these same financial struggles, and you cannot possibly provide for them all; but whatever you can spare to help my family would be greatly appreciated and truly impact my child’s future. There are not enough words to describe what this would mean to us.

Some fun facts about Easton – he has three major loves: his big sister, the outdoors, and his stuffed snakes (stuffed animals). Easton and his sister are inseparable. While Emery’s speech still has much progress to be made, she is able to help communicate with others what her brother needs; Easton knows he can always rely on his sister to help him (even when it’s getting into trouble!). They will spend hours outside every week exploring their surroundings, playing in mud puddles, climbing into their treehouse, and laying on the trampoline. Easton is attracted to anything he can drag or whip around in the air…like his stuffed snakes. His snakes, as Emery says, “are his best friends”. He has five snakes, each 4-5 feet long. They go with him everywhere. The bring him instant happiness, calm him when his is upset or scared, and keep him company in his cubby hole (he climbs into his cubby hole when overstimulated). And only the snakes are allowed in the cubby hole.”

Giving a child a voice is really a gift for not only the child, but for their family, friends, and teachers.  To help us give Easton and all non-verbal kids a “voice” – please donate today at www.varietykc.org/donate.

Thank you!

 

Meet the Kids – Keisha!

Meet the Kids – Keisha!

Keisha was shaken as an infant and suffers from some developmental challenges and hemiparesis of her left side. She has some atrophy of the muscles on her left side and struggles to stand and walk. She is making great progress and desperately wants to be self-mobile. She originally had to have a tracheostomy tube, but has progressed enough that recently her trach tube was removed and seems to be doing well with all of the measurable for oxygen, pulse, and blood pressure. We hope that the closure of her stoma in her throat will allow more oxygen to her left side and enable her, with lots of exercise and physical therapy, to begin to stand and walk on her own. We hope that getting her an adjustable trike will allow her to pedal and improve synchronized movement in her legs safely. We think this may improve her circulation and strength over time.

“Yes, Keisha was shaken as an infant, but that has not stopped her beautiful personality from shining through. She continues to fight for physical and cognitive gains and has been blowing us all away with all the growth she has shown. We’ve known her for about a year, and she has been in our home since February, but we have seen so much development that it is hard to see any barriers that will keep this girl down. She is absolutely the best example I can think of for the triumph of the human spirit and we love when she can share her gifts for positive motivation and strength to overcome adversity with the world.

Keisha is an inspiration. Her smile brightens the whole room and she can tell an entire story with her eyes. She is truly an amazing and inspiring little girl. Nothing gets her down. We have seen her go from being largely mobile on only her bottom to zipping around the room with just the use of her right arm and leg. She has taken her first step with us and we love to take her on walks in her walker. She is the most social of butterflies and greets everyone she passes with a smile and a wave. She has recently begun communicating verbally and says hi loudly to all our neighbors and friends. She loves giving warm hugs and high fives and we love her very much.

Keisha is an extrovert and bright shining example of somebody that always wants to brighten the days of those around her. Her smile and wave instantly bring you in and make her your friend. She was nonverbal for most of her life, so she can truly speak to you in facial expressions and hand gestures and her ability to smile brighter than anybody else. She can now sing along to the ABCs and Baby shark and loves music at the top of her lungs. Her older sisters have introduced her to some of their old favorites and she picks them up quickly. Her bright cheery nature is bolstered by a brilliant mind that is soaking up so much information. She loves to go on walks and we love to take her. We hope we can start taking her on fun bike rides as well.

The trike, we think, is the next step in building strength in her legs and improving circulation to her atrophied limbs. She is going to do great things and shine.”

Variety KC partners and donors think every kid should have a bike!  Won’t you help us make that possible?  Donate today at www.varietykc.org/donate

Thank you!

Meet the Kids – Ja’Mya!

Meet the Kids – Ja’Mya!

Ja’Mya is very determined and works very hard at school to meet her goals despite her disability. She is a very sweet girl and enjoys interacting with a variety of people. She has tackled a lot of obstacles in her young life and is an overcomer!  And above all – Ja’Mya loves spending time with her family.

Ja’Mya would benefit a lot from having an adaptive bike to assist with her sensory regulation combined with her regulation diet. She loves riding bikes, but does not have one at home.She is very excited at the possibility of getting a bike because she sees other children playing and riding outside. This would give her an opportunity to get physical exercise, to experience a sense of independence and most importantly – being included in activities with friends and family.

To help Ja’Mya get her bike, please donate now at www.varietykc.org/donate

Thank you!

 

Meet the Kids – Quinton!

Meet the Kids – Quinton!

Quinton was born with Hypoplastic Left Heart Syndrome and by the time he was six months old, he had already undergone two open heart surgeries. At 13 months, Quinton suffered seizures while sleeping. The lack of oxygen to his brain caused significant brain damage. He quickly went from a boy who was walking, learning and talking – to completely non-verbal, tube fed, wheelchair reliant.

His mom says Quinton has an amazing smile and he uses it during his favorite activities of being outdoors and being included. Summers for Quinton mean outside play and visits to the lake.

It isn’t easy and certainly at times they have to get very creative, but Quinton’s family tries to keep his life as “normal” as possible. His two younger sisters enjoy going on bike rides, after all – the Katy Trail is right by their home. Quinton would love to go too, but they couldn’t find a bike that fits his needs.

Now they have!  This bike, powered by his parents, gives Quinton a front seat look at the world! It gives him the freedom to be outdoors and involved with his sisters.  Thank you Variety KC donors – you made this happen for Quinton!

Doesn’t every kid deserve the right bike?  Donate today at www.varietykc.org/donate

Thank you!