Theo has a syndrome called Rubinstein Taybi which leads to cognitive and developmental delays. As is typical with his syndrome, he has tone and coordination issues. Although he can walk and run, it is challenging for him to alternate feet while going up and down stairs and he is a bit unstable while running and jumping. Theo also has cortical visual impairment which effects how he processes his visual cues. Theo is mostly non verbal and uses sign language, word approximations and his communication device to help him communicate his needs and wants. Due to Theo’s tone and coordination issues, he can’t always perform tasks that other 7 year olds can. He is very aware of this limitation, especially now that he is in Kindergarten, and it is hard for him. Read the following letter from his family to learn more about this special little boy:
“As parents who have so much love for this kiddo, it is hard to talk about Theo’s story without becoming tearful. His story is one filled with perseverance and resilience, hope and love.
When I was pregnant with Theo, we were told at my 20 week ultrasound something was very wrong with our baby’s heart, the term used that day was “non compatible with life” and we were forced to make a decision that no parent should face. The following weeks were filled with heartache and tears as we prepared for the unknown. Theo entered this world a bit early and was born at the Fetal Health Center at Children’s Mercy, one week later as everyone worked to keep Theo alive, we were flown to Boston Children’s Hospital so that Theo could undergo open heart surgery at the hands of one of the only surgeons in the country that had worked with his rare defect. Hope.
At only 10 days of age, Theo underwent open heart surgery. A few days later, while Theo was still in the ICU we received word that he had a rare syndrome called Rubinstein Taybi. We meet with genetics and worked hard to try and understand how we would be able to best help Theo. That tough little guy entered this world fighting to live and he continues to fight to run, jump, talk and achieve what comes easily to most other kids. Resilience.
Due to Theo’s syndrome he struggles with poor physical tone and coordination. He tries so hard to keep up with his 3 other siblings and peers and is frustrated by the limitations of his body. His favorite character is Lightning McQueen and I’ve always wondered if it’s because he wishes he too could race around a track. To this day we work to allow Theo to have all the opportunities that he deserves. An adaptive bike will help him ride with his siblings, giving him a little taste of “speed, I am speed” in true Lightning McQueen style. Perseverance. Theo is an amazing kid with a big heart and a lot of love to give. We laugh that he is the most popular kid, everywhere we go people recognize Theo and stop to say hello. He always has a smile and one of the tightest hugs you will ever receive to give. We adore our Theo. Words will never fully describe how happy we are that he is ours, our brother, our son, our friend.”
Variety KC partners made sure Theo received his bike, giving him a gift of freedom, independence, physical activity, and his desired “speed.” There are so many kids like Theo who would benefit from an adaptive bike – please help us help them all! Donate today, www.varietykc.org/donate Thank you!
Read how a sprained ankle led to a big discovery for Benji and his family!
“Benji is an outgoing, independent, very kind little boy, who is diagnosed with FSHD muscular dystrophy. His diagnosis means that he has a general weakening of the muscles in
his face, arms and legs (although any muscle in his body can and may be affected at some point). This disease affects every individual very differently. Some people are
very affected, like Benji, and some nearly asymptomatic, as in myself, his mother.”
Being a preteen, and wanting to keep up with his three older brothers, and friends at school, as well as not wanting to stand out from his peers, Benji fought a mobility aid for about a year. A sprained ankle forced him into a wheelchair to allow that ankle to heal, which allowed myself and Benji, to notice a dramatic improvement in his mood, and physical strength at the end of the day! He was not pushing himself to near exhaustion when using the wheelchair, and had a new and improved outlook on life! By using the wheelchair, we are trying to preserve as much leg
muscle as he has left, and still allow him to walk short distances (into the pool for therapies, into the restroom to keep his independence with self care, etc). This is a nasty disease that definitely has put a damper on my little man’s spirits some days, as he is coming to terms with a more limited mobility, but he is a fighter and his teachers will tell you that he the last to ask for help, the first to help another person in need, and the most positive and uplifting kiddo they have met!”
Once again, proof that the right equipment is what it takes to make inclusion possible! Benji is getting his wheelchair, but there are so many others who would benefit from similar equipment. Please help Variety KC make that happen! Donate today at www.varietykc.org/donate
Thank you – and thank you for joining our #inclusionrevolution
Of course we said “yes” – Please read this letter from Kenny’s mother:
“My little boy’s name is Kenny. He has autism spectrum disorder. He is a very happy, affectionate, and energetic boy. He has a vivid imagination and loves Paw Patrol and Peppa Pig. Kenny has issues with balance and motor skills. He has tried to learn how to ride a two wheeled bike for years with no success and lots of frustration, not even with training wheels. He is unable to balance himself and coordinate the balance and simultaneous movement required for a two wheeled bike.
Now he is at the size where I can’t hold him on the bike to help him balance or guide him on it (we’ve tried that too). When he sees the neighborhood kids his age riding down our sidewalk on their bikes he tries to run after on foot and catch up with them. I know he wants to be like them and experience what it feels like to ride a bike outside. Having the adaptive tricycle would benefit Kenny physically, socially, and emotionally. It would give him the opportunity to interact more with peers, increase his self esteem and sense of accomplishment. It would give him the opportunity
for more movement and encourage a healthy lifestyle, especially since he also struggles with weight issues.”
She is exactly right – every child deserves a bike and it does contribute to confidence, physical wellness, and belonging! Help us to make sure every child has a bike. Donate today at www.varietykc.org/donate Thank you!
Meet Zara. She is a determined young girl who brings joy to everyone who knows her. Read what her family wrote about her:
“Zara has a rare neurodevelopmental disorder called GATAD2B associated neurodevelopmental disorder. Essentially, she has global delays related to impaired messaging from her brain to her body. It takes lots of repetition and muscle memory for her to achieve new
milestones and continue to achieve them. She is primarily non-verbal and communicates via word approximations, signs, and a communication device. Her mobility is also impaired and she has difficulty with balance and strength. She started walking around 3 years of age and is starting to
ride a bicycle at school now.
Zara is one of the happiest and most determined children I know. She has been doing some form of therapy since she was only a few months old. We have no doubts that Zara will achieve many things in life if given the right amount of time and resources. She brings joy to everyone who knows her with you beautiful smile, contagious laugh, and kind heart. Zara inspires me daily to try and be better by her determination to keep trying things even when they are hard. Zara loves to be outside playing with her friends, siblings, and family. She has recently found joy in riding an adaptive bicycle at school and this has helped her mobility and independence at school. We would love to be able to continue to support her independence with an adaptive tricycle at home as well. This would allow for increased freedom for both Zara and our family to be able to go on
family outings without the fear of Zara falling or not being able to fully participate.”
It’s true – EVERY child deserves to ride a bike, and Variety KC partners made sure Zara had one of her own! Help us to get every child on a bike – donate today at www.varietykc.org/donate Thank you!
Anthony is nearly five-years old and the youngest of three boys. He has a diagnosis of Autism Spectrum Disorder and is non-verbal.
He is a very friendly and social little boy, especially once he gets to know you. He loves tickle games and all kinds of music. He is also very bright, making huge strides at home and school. In the classroom, he uses a speech generating device to help him communicate and he is really good at it! He uses it to greet friends, to request something to eat or drink, to count with his class, and to name shapes. The speech device has to remain at school and his family would love to have one to use at home. Having one in both places will assist in learning and most of all – increase understanding of his needs and wants.
Variety KC supporters have seen just how well Variety Kids do when given the right tools and resources. A communication device can be life-changing and that’s what we want for Anthony and his family, so Anthony is getting his device. Unfortunately, there are so many others who need a “voice” as well. If this message resonates with you, please donate to help give kids a voice – www.varietykc.org/donate Thank you!
Jeremiah has Cortical Visual Impairment and has been delayed in every milestone, but he is one amazing little guy. According to his Vision Specialist “he is a go-getter and a problem-solver.” He doesn’t wait for his environment to come to him to explore, he goes to explore.. According to his grandmother, this is one reason safety is a concern. He doesn’t have much fear. He is always eager to explore everything. “I watch him daily and I am amazed daily at what he can do regardless of any circumstances.”
His grandmother tells his story: “Jeremiah is a miracle boy. I know all children are, but he especially is. His biological mom didn’t know she was pregnant until she was seven months pregnant, had no prenatal care until then. She was on a number of prescription drugs as well as using Meth. Once I was aware, I watched her closely and we had many appointments with an OB. To our amazement, he was born healthy, with some minor issues that kept us in the hospital a few days longer than normal before we could bring this bundle of joy home. At five weeks, Jeremiah developed RSV and went downhill quickly. On the 4th day, he needed to be ventilated. Thank the good Lord we were at Children’s Mercy Hospital. During the process he coded and was without oxygen 6-8 minutes. When he came back, it took the doctors and nurses 10 solid hours to stabilize him. According to the doctor everything that could go wrong with him, did.”
Amazingly, he recovered.. He even overcame Nystagmus without surgery! He was, however, diagnosed with CVI. He is speech delayed, and receives PT, OT, Speech Therapy and Vision Therapy. Jeremiah is a growing boy and recently outgrew his stroller. Due to his CVI, he doesn’t have great balance and is too heavy to safely carry around. There is a mobility solution for him – the Wonderful Wagon. It’s big enough to allow for him to grow and still use it and most importantly, he can be secured in it for his own safety.
Variety KC supporters love that this request was one that allows Jeremiah to get out in his community, engage with others, and it allows for mobility SAFELY. This month, Jeremiah’s got his Wonderful Wagon. There are so many kids like Jeremiah who are too young for some mobility equipment, but too big to be carried – help us to provide a safe alternative for them – donate today, www.varietykc.org/donate