Sebastian and his twin brother were born in November of 2004 at Providence Memorial Hospital in El Paso, TX. Though his brother was developing without issue, midway through the pregnancy Sebastian began to present developmental issues. Due to the gravity of his condition, his doctor decided to schedule a C-section at approximately 30 weeks. When the C-section was performed, the doctors noticed Sebastian was extremely small and had various other issues present including excess of fluid buildup in his head, which we later learned caused significant brain damage. Shortly after the C-section he went into respiratory distress and was placed on mechanical ventilation. He weighed only 2 pounds and 8 ounces.
Sebastian was diagnosed with Pierre Robin Syndrome, Micrognathia, a cleft palate, and various other disorders. Due to his fragile state, the doctors told us that his chances of survival were not great. On the second day of his life the doctors decided to transfer him to Santa Rosa Children’s Hospital in San Antonio where he remained in the NICU for 6 months.
Once there, he was fighting for his life and underwent several surgeries including a tracheostomy. He faced many challenges during his hospitalization and many times we were unsure of whether he would ever leave the hospital. Miraculously Sebastian was able to overcome many of the difficulties during his hospitalization and eventually came back home to El Paso.
Unfortunately, this was only the beginning of many of the obstacles he would have to face throughout his life. Sebastian’s immune system defenses were very low for the first 5 years of his life. Every time he would catch a cold, he would end being hospitalized and in a very fragile state in PICU.
As Sebastian got older, learning to walk and talk was extremely difficult. His tracheostomy made it difficult for him to properly verbalize words and communicate. He has undergone countless hours of speech and neurocognitive therapy. Despite his current age of 14, his mental development is one of a 6 or 7-year-old child.
Despite all the challenges and obstacles Sebastian has had to overcome, he has a very strong and upbeat attitude. He continues to impress and surprise everyone around him with how much he continues to improve, and he has overcome many physical disabilities. He has learned to walk properly and breathe better than what could have possibly been expected. He had several surgeries to fix cleft palate and enlarge his jaw. His immune system is much stronger now, so he doesn’t end up hospitalized every time he catches a cold.
Aside from his physical disabilities Sebastian has overcome, his personality is truly one of a kind. He is extremely brave. He has never been afraid to go to the hospital, even when he knows he will be having a procedure done that may hurt him. After his many surgeries, he has never complained during his recovery and his pain threshold is quite remarkable.
Sebastian is a very caring person and shows compassion for other people. He always puts others before himself. He loves conversing with people, making friends, and learning about new things. He is fascinated with trains, which have been his favorite topic since he was 2 years old. He is also very independent and loves doing things on his own. Even when it is obvious he needs assistance, he will always try to figure things out by himself. His enthusiasm for life is truly inspiring.
Another thing that has surprised everyone about Sebastian is that his mental comprehension is above and beyond what was ever expected of him. He understands and comprehends right from wrong and will try to teach many of his peers what he learns. His ability to retain information has also surprised his doctors.
Sebastian understands that he is different from other kids his age, but it doesn’t bother him. He faces all challenges head on with utmost confidence and determination. He is looking forward to starting High School this upcoming school year. He truly is a mentor and role model for other children around him.
Sebastian just recently had his tracheostomy removed and only uses a CPAP to sleep at night. Apple HMS in El Paso did a tremendous job in working with him in using his CPAP, and I believe that much of his success in the past couple of months has to do with the care and attention Apple HMS has shown to Sebastian, helping him get to where he needed to be with his CPAP so that his trach can be removed. We wish we would have had Apple HMS since the beginning, but we are definitely grateful that Sebastian is now a patient of theirs.
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