The Story
Meet Dylan, a teenager with a quiet sense of humor, playful spirit, and just enough mischief to make him unforgettable. During his schooling, he sometimes pretends to be asleep to avoid assignments, then peeks to see if his teachers notice. Moments like these capture the joy and personality that shine through, no matter what he faces.
Dylan lives with MECP2 Duplication Syndrome, a rare and progressive genetic condition that affects almost every part of his life. It leads to significant developmental delays, low muscle tone, limited verbal communication, and frequent infections. As Dylan grows, his condition evolves, bringing increasing medical and neurological challenges that require constant attention and specialized care.
Dylan needs continuous, individualized support day and night. Everyday tasks like eating, bathing, and moving safely require hands-on help. Ongoing therapies, such as physical, occupational, and speech therapy, are essential to maintaining his abilities and helping him engage with the world around him. Regular medical care, daily medications, and specialized equipment are also critical to protecting his health and quality of life.
Because Dylan is medically fragile, even simple outings pose risks. To keep him safe, care and support are brought directly to his home, including visits from doctors, teachers, and therapists.
That’s why SOARD is stepping in to create a dedicated therapy room for Dylan, transforming his home to better support his daily life. This new space will give Dylan the opportunity to move beyond the confines of his bedroom and into an environment designed specifically for learning, therapy, and growth. With room to safely participate in therapies and schooling, Dylan will gain increased stimulation, improved engagement, and greater independence. It’s more than just a new room, it’s a chance for Dylan to experience new energy, new routines, and a higher quality of life within the safety of his home.
At the center of it all is Dylan’s mother, Natalia. A devoted single parent and tireless advocate, she has dedicated her life to caring for him. Through every challenge, she works relentlessly to ensure that Dylan experiences the joy, connection, and meaningful moments that make childhood and adolescence so special. In doing so, Natalia shapes his world into one filled with possibility and hope.
