MEET EMMETT (affectionately know as “EM”) #opinionated #bestkindofadventurous 💫🕺🏼

“At two and a half months old we found out Emmett, our first born, was in liver failure. That day completely changed our lives as we spent months at Primary Children’s hospital in Salt Lake City working to figure out why. Ultimately Em was diagnosed with an ultra rare metabolic genetic disorder called PMM2-CDG. It affects every aspect of his life as he is wheelchair dependent, non verbal & spends most of his little life in the hospital thanks to a slew of medical issues. Despite all that he is HAPPY & thriving! He is so cognitively aware of his surroundings & this boy is OPINIONATED 😂 He loves all things Disney, reading & dance parties with dad on Saturday mornings. He’s loud & proud and handles the many, many challenges he faces with such a grace that it’s hard to put into words.

He’s funny and charismatic and the best kind of adventurous! I wish everyone could meet him. He has a way of changing you. Getting Em into a bucket bike was one of the most emotional experiences. I never thought we’d have the opportunity to get him on a bike as he got older & bigger. That type of freedom for him is indescribable. Forever grateful for our Em & forever grateful for Lisa & Red for his bike!” @theryliegirl, Em’s warrior mom 🌠