About Rylan
This is my son Rylan. He is almost 3 years old. He was diagnosed with CHAMP1 in June 2023. I was relieved to finally have the answers I advocated for. This ultra-rare genetic mutation causes severe speech delay, intellectual disability, as well as other symptoms.
Rylan loves music! Anything from mom singing, listening to music on the Alexa, or even live music! His favorites from mom are “The Itsy Bitsy Rylan,” “Five Little Rylans,” and “The Wheels on the Bus.” He’s always up for a dance party too! He loves reading books and flipping through the pages. Playing peek-a-boo and hide-and-seek is a must! He sure knows how to light up a room and make everyone laugh!
Rylan works extra hard in various therapies and in his day-to-day life to reach his milestones. Each milestone is a celebration and is so special to us. It takes time and consistency, but at his own pace, he is unstoppable! In physical therapy, he is currently using medical equipment to work towards walking and building his muscle tone. In occupational therapy, he is working on independent feeding, drinking, as well as motor and sensory skills! He is striving and learning so much every day.
He has had challenges with multiple hospitalizations, surgeries, and procedures, but no matter what he goes through, he is always laughing and smiling. I said it once and I’ll say it again: he lights up a room and can change a frown to a smile. He makes the world a brighter place. He teaches us to slow down and enjoy the little moments and to not take them for granted. I couldn’t be more proud of him… I was meant to be his mother, and he was meant to be my CHAMPION!💜
