After Elijah Parker was diagnosed with Congenital Muscular Dystrophy in utero, doctors shared a devastating prognosis with the family. He was not expected to survive birth, and if he was born, was not expected to make it past the first week.
Elijah has Walker Warburg Syndrome, a rare form of Muscular Dystrophy affecting one in 60,000 births. Elijah’s diagnosis resulted in Hydrocephalus, seizures, chronic lung disease, vision and hearing impairments and only one kidney. He received a tracheostomy this fall.
Though faced with many health challenges, Elijah continues to fight as a happy two-year-old.
“He loves music. He loves to watch movies. He loves singing,” said Elijah’s mom, Amy. “His favorite movie is the Minions, and he has a little keyboard he loves to play.”
Amy submitted a wish for Elijah through Dream Connection, an organization in East Tennessee with a goal to fulfill a child’s “once-in-a-lifetime dream come true.” Through a donation from NSM to Dream Connection, their wish for additional mobility and therapy equipment for Elijah was granted, including an easy stander and car seat.
“Elijah has been such a joy to get to know,” said Michelle Peck, a registered nurse with Dream Connection. “One of the first things Amy said to me was that he brings a light to everyone who meets him, and he absolutely does.”