Mateo is a sweet, sassy, and loving boy from Sunnyvale, Texas who loves to make new friends and make people laugh, as well as hold hands and cuddle, especially during therapy! He is four years old and currently receives trach supplies, oxygen tanks, feeding supplies, and diapers from Apple HMS. Mateo’s mom was kind enough to share some of the many fantastic things about him!
Mateo has CHARGE Syndrome and is legally deaf-blind, but has still found a way to become mobile and to learn and use both American Sign Language and an eye gaze board to communicate. He loves bubbles, the movie Encanto, glow in the dark toys, and his big brother Liam. Mateo started his first full year of school this fall and loves it; he especially loves his teacher and classmates!
His teacher, therapists, and some substitute teachers describe Mateo as the most expressive non-verbal child they have ever met. He is uniquely motivated to accomplish new things and get his point across in any way he can. Though he is very determined, communicating with new people is still a challenge Mateo faces daily. Sometimes he gets so frustrated he will hold his breath until he is purple. We get his attention and remind him he has a voice, and then ask him yes or no questions to help him let us know what his wants or needs are until he can receive an eye gaze board of his own.
Recently Mateo reached a big goal: he has come off the ventilator full time! It has taken us four years and in spring of 2023 he accomplished it! He has overcome many illnesses in the past years such as sepsis, covid, intestinal ruptures, and over 16 surgeries, but this fall Mateo achieved his first full hospital admission free year. Mateo is unable to walk or sit independently, but he works very hard daily with his therapists and me to gain mobility and strength. His daily resilience and motivation always amaze me and makes me stive to be more like him.
One of the greatest joys I’ve gotten to experience as Mateo’s mom is watching the bond between Mateo and his older brother grow, especially at home. Also hearing him laugh for the first time in over 3 years with his speaking valve has been great! Getting to see his personality grow and how much he makes us laugh each day has been a very big joy for all of us at home.
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