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!
