Thank you for inquiring more about our son Mateo (Tay-o, for short). We appreciate anyone who wants to know more about him and our life’s journey. We are grateful for every day and every individual who helps support our cause.
Mateo was born April 16, 2019, the day of our scheduled c-section. Having a healthy pregnancy, we expected everything to go as planned, but unfortunately that did not happen. Within minutes of Teo’s first breathe he started turning blue. It didn’t take long to realized there were multiple issues throughout his body, compromising his health and well-being. Immediately rushed to Dallas Children’s Medical Center, he was admitted in the NICU wing, to be somewhat stabilized and assessed properly. With that, he was found to have severe heart issues with a deviated septum, mixing oxygen rich and oxygen depleted bloodstreams. At only 48hrs old, Teo was sent into his first of many emergency procedures. For the next 28days, we lived in the NICU unit working to find his body’s balance. Still, with many unanswered questions and concerns, they eventually sent us home thinking Mateo was manageable. Teo’s complex issues left us, at times, feeling hopeless. As parents, we did the best we could, but after only a week at home, we felt he needed more support, sending us back to Children’s. During the almost year-long stay that followed, there were countless stressful days, emergency procedures, and surgeries (20+). Long story short, we did everything we could during his lengthy stay to help him find stability. It wasn’t until 6months in that we finally learned of Mateo’s true diagnosis, a rare genetic issue known as C.H.A.R.G.E. Syndrome. We learned that day that our lives would never be the same.
CHARGE syndrome is a recognizable genetic syndrome with known pattern of features. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. CHARGE syndrome is correlated with genetic mutation to CHD7 and the prevalence of CHARGE syndrome is 1:10,000-1:15,000 live births.
Babies with CHARGE syndrome are often born with life-threatening birth defects. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems that delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations. One of the hidden features of CHARGE syndrome is the determination and strong character these children display.
While extensive research has been conducted, there is still a lot to learn. Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. This understanding leads the way to medical and educational interventions and therapies which help people with CHARGE syndrome overcome many of the obstacles in their lives.
-The CHARGE Foundation
After that long-fought hospital battle, months of balancing his body and lots of medical training for us, it finally happened. On May 5th, 2020, weeks after his first birthday, Mateo was discharged. It was time to come home!!
Today, Teo has been teaching us how to live again, finding relative health that keeps him away from hospital stays. He still bears many reminders of his beginnings through scars, holes, and medical equipment. Daily therapies help improve developmental and neurologic issues, which delayed his progression. He is non-mobile, not crawling, walking, or even sitting up on his own. Due to Laryngomalacia (LM for short), which translates to a soft (floppy) larynx compromising his airways, Teo is trach dependent. Mateo has also been diagnosed with profound hearing loss and is considered legally blind. Though both diagnosis’ are confirmed, we have no doubt he is seeing and hearing the world around him. His reactions and communications are proof enough. He is also tube fed through a button, attached to abdomen. Receives feeding therapies, where he gets to taste food, but nothing substantial (absolutely loving papa’s roasted cauliflower soup!!). And even after all of that, with the additional 24hr medications, breathing treatments, therapies, nursing care, doctor appointments, etc., Mateo survives and keeps proving himself every day.
Other than that, Mateo is just like any other child. He’s fun, playful, and happy as can be. His cute and peculiar laugh able to change anyone’s day in a snap. And if he’s not the cutest of the cute. His beautiful smile, lifting anyone who sees it. For the most part, super loving and affectionate, always good for a hug/kiss. He plays lots of games, most of his design, driving us crazy at time. He loves grabbing anything he’s not supposed to, setting of equipment alarms regularly, making our jobs completely difficult, all while laughing to the point he does his fair share of breathe holding (One of his many talents. We say his training to be an Olympic free diver). As well as throwing tantrums, fake crying, and all the signs of a growing boy. All these antics have come to affectionately known as “Teo Trick’s.”
Mateo is literally a job for most people in his life, but for my wife and I, it’s merely another form of love and parenting. All props to my wife, as she has dedicated her life to our boys, no matter how steep the climb. Doing all the “heavy lifting,” scheduling all the appointments, securing all medical supplies, and working with all the providers. Daily, as I step away to supply the massage community and keep Body Logic running, she hangs tough for our family, keeping the boys healthy and strong, and for that have much appreciation and love. Also want to give much love and admiration to my son Liam, who has endured so much at such a young age. This journey is not fair to any child, but he always understood and stayed patient. Our path has molded his soul into the most kind, thoughtful and caring you could imagine. And he has truly become the “shining light” we hoped. Not to mention his love for his little brother Mateo is second to none. Thank you both for bringing us strength along the way.
It is obvious our lives were forever changed the day Mateo was born. And nothing could’ve ever prepared us for our battle, except faith. Almost like looking into a crystal ball, we found solace and peace knowing our life’s purpose was fruiting. Our life’s hardships and toils had built us into the exact parents God intended. With faith, we knew we had already been prepared for the journey ahead. With faith, we never dwelled, pointed fingers or placed blame. With faith, we simply held true and knew Mateo had a purpose. And we, as his parents, had an obligation to see his purpose, and share his story. In today’s world, silver linings are sometimes hard to find, but in our lives, we get to see them every day. Today, every breathe Mateo takes is a victory and blessing. And though Teo may only know life surrounded by medical everything, we do our best provide, he and Liam, a life of normalcy and love. We feel beyond blessed to have been gifted such wonderful boys. Diana and I both, from the sincerest depths of our mind and hearts, thank everyone who becomes a part of our team, Team TeoRey. Thank you much for learning more about Mateo and our family’s journey. Every customer is helping in supporting such a special cause, and we can never thank you enough for that. Thank you!