Living with ReNU Syndrome
Sammy
Sam is a bouncing ray of sunshine to all those around him. Sammy is 5 and we live on the east coast of the USA.
When Sam was born, his lack of eye contact, small head size, and delayed milestones started us on a journey to better understand Sam’s challenges.
Our family has experienced a litany of specialists, medical encounters, and health challenges with no clear explanation until now. We began early intervention at 5 months, including vision, speech, and occupational therapy.
Each day, Sam surprises us with his progress and growth: From crawling, to walking, to running, to jumping on any bed in sight! He has also gone from babbling on his augmentative and alternative communication device to making requests and observations. His favorite requests are “Watch Elmo” and for his preferred snack: “goldfish”!
Sam loves to swing at the playground, wrestle with his brother, bounce balls, and splash at the pool.
He is an accomplished snuggler who gives tight hugs around your neck.
After years of questions with no answers, we are surprised and grateful to join the ReNU community. Immense thanks to the amazing parent advocates uniting ReNU families and scientists worldwide.
Sam has expanded our perspective on different ways of being in the world, on patience, and on joy.