Marek S.

Marek, the son of Grace and Marc, was born on August 6, 2002. He has two siblings, Caelum and Beckett. Marek has a rare genetic condition called Congential Disorders of Glycosylation, which causes seizures and an inability to talk, walk, sit upright, or chew. “Marek has been a teacher of patience, compassion, and understanding,” his parents explain. “He helps us to slow down and see the joy in all the little things in life—he has the best smile and belly laugh. And he is a tremendous fighter with strong perseverance. He loves his family wrestle time. He rewards us with huge grins, belly laughs and pterodactyl song—his pterodactyl voice is also evident when Marek listens to music, as he loves to sing along!”

Marek’s family would like to thank the CDG Family Network,, for its information and support.