Meet the Kids – Jack the Fighter!

Meet the Kids – Jack the Fighter!

This is the story of a fighter, written by his parents – his champions:

Jack was diagnosed at 20 weeks gestation with a critical heart defect. We were told he may not survive the pregnancy and if he did the likelihood of survival after delivery was unlikely. We traveled to St Louis where a team of doctors were willing to help give Jack a fighting chance at living. Jack was born at St. Louis Children’s Hospital on January 16th, 2018. He came out crying and we knew then he would be a fighter. His heart defect had damaged his lungs and his only option of living outside of the hospital was a heart and double lung transplant. At 4 months of age Jack received his second chance of life and on May 24th, 2018 he received his transplant making him the first infant heart-double lung transplant in the country in over 10 years. On August 1st, 2018 Jack was finally discharged home. Our dreams of bringing him home had become reality.

Jack will be four soon and loves playing outside, jumping on furniture, playing with his siblings and watching football to name just a few of his favorite things. He suffers from a paralyzed vocal cord and diaphragm secondary to his transplant. This makes vocalizing sounds very difficult for him. We use basic sign language to communicate with him but we know he has more to say. We want Jack to be able to express himself and tell us exactly what he needs/wants without getting frustrated. A communication device will allow Jack to communicate so much better at school and home. As his parents, we know he has lots to say and we feel we owe it to him to help him in any way we can. We want him to feel heard and understood, not just by us, but by others around him too.

Now it is your chance to be another of Jack’s champions!  Donate today and give Jack the voice he needs through assistive technology – www.varietykc.org/donate  

Thank you!

Meet the Kids – Brigham Gets a Voice!

Meet the Kids – Brigham Gets a Voice!

We recently received this note from some Variety KC parents, “Brigham is 4-years-old and all boy. He has strengths and struggles just like most children. He could ride a bike and learned to swim at age two. He has impressive problem-solving skills and likes to get into mischief. However, Brigham has his struggles too. He was diagnosed with Apraxia and while he is working toward approximating words, he still is difficult to understand and cannot form whole words or sentences. This causes frustration, stress, and anxiety for all of us. With an AAC device, so many doors would open for Brigham. By giving him a voice we would finally be able to see and hear what he is thinking and feeling. It would not only change Brigham’s life, but our entire family’s.”

Many of our Variety KC Kids have an Apraxia diagnosis. It is a “neurological disorder characterized by the inability to perform learned (familiar) movements on command, even though the command is understood and there is a willingness to perform the movement. Both the desire and the capacity to move are present but the person simply cannot execute the act.”  For example, a student may be taking a spelling test. They know the word, even know the spelling of the word – they just can’t get that word written on their paper at that moment. It’s frustrating, hard on self-esteem, and frequently leads to misunderstandings.

Variety KC Supporters understand the need for devices to assist our kids with Apraxia and they’ve made it possible for Brigham to have the tools he needs.  Please help us to help other kids like Brigham, your donation can give them a voice. www.varietykc.org/donate

Meet Brinley

Meet Brinley:
A little about Brinley… Brinley by nature is an athlete and a lover of all sports. She was the starting defender on the #1 ranked Independent Priemer Kansas soccer club, Mission United. She was also the starting catcher for Team Kansas. On May 17, 2021 Brinley was admitted to Children’s Mercy due to an infection that resulted from being cleated earlier that month during a soccer tournament. Due to the rare and aggressive nature of the infection, the doctors ended up having to amputate her lower left leg in order to save her life and with the hopes to keep the infection from spreading any further. After 18 surgeries and 47 days in the hospital Brinley is now relearning how to live life as an above the knee amputee. While this is not how Brinley or any of us imagined how things would have turned out, Brinley is determined to get back on the field. The sports leg would give her the mobility to get back to her true passion and love, catching. As well as continuing to play soccer. Brinley has always had the hopes and dreams of playing college sports and she has not given up on these dreams. A sports leg will get her that much closer to realizing her dream. As you may know prosthetics are very expensive and insurance does not cover sports legs. Help Variety KC help Brinley by donating to Varietykc,org

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Meet the Kids – Ripley!

Ripley was born with arthrogryposis. This condition occurs in utero and causes the joints to not form completely. In Ripley’s case, her knees, hips, and ankles are malformed and lack any muscle strength. Her shoulders also are effected and her fingers are fused. Ripley is wheelchair bound, nonverbal, and has a developmental delay. She is unable to perform basic daily tasks to care for herself. She is a very joyful little girl.

Ripley has currently outgrown a lot of her equipment that she uses for her daily needs. One of those items is her bath chair. Her current chair is too small and no longer supports her properly. A new bath chair with help us care for her and bathe her more easily. The features this chair offers will help support her back and head for proper care and comfort, as well as being high enough to move her in and out of the shower more easily as she has become too big for her parents to lift without assistance.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Xavier!

Xavier is diagnosed with Autsim, ADHD- combined type, Apraxia of speech, receptive-expressive language disorder.

Xavier is a very smart and loving 4 year old with autism. Xavier loves to go to the park with his cousins and go to the aquarium for short times. He is such a water child that we are looking into swim classes for him. When my son was diagnosed with autism I begun fighting for his voice until he found his own. It was been a long 2 years of trying to find the right services, schools, and therapy for him. we are finally starting to see some progress with his communication ( nonverbal) recently. A speech device would greatly help him become more independent and hopefully decrease some behaviors that come with not being able to express himself to others.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Everett!

Everett is diagnosed with a rare chromosomal difference, Trisomy 4p, which is accompanied by global developmental delays, epilepsy, hypotonia, microcephaly, and malformations in the brain, inner ear, airways, and kidneys.

Everett is a sweet and curious toddler! He loves spending time with his family, big trucks, and stars. We began to explore the possibility of Everett having a unique genetic structure when he continued to miss developmental milestones throughout the first year of his life.  We transitioned Everett to individual care in our home, which allowed us to focus on integrating his therapies into his day.

As Everett approaches the age of 2, he continues to amaze us with his progress. It takes so much work and dedication for Everett to develop new skills, and he now crawls and stands with assistance! Everett receives individual and group therapies at Britain Development Center and is learning how to engage and socialize with his new friends. Everett’s all time favorite activity is being outdoors. Everett’s independent mobility is limited and he grows tired easily in his gait trainer. Having an AmTryke would offer Everett the freedom to explore when playing outside while learning new skills. Everett’s amazing therapy team has been using a trike to travel between rooms during individual therapies – he gets so excited, he doesn’t want to get off the trike to do his therapies!

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution