NASHVILLE, Tenn. (March 11, 2019) —Elijah Parker was diagnosed with Congenital Muscular Dystrophy in utero. He has Walker Warburg Syndrome, a rare form of Muscular Dystrophy affecting one in 60,000 births. It’s a condition that comes with a devastating prognosis. He was not expected to survive to be born, and if he did, he was not expected to make it the first week. Today he is two years old.
His mother, Amy Parker, submitted a wish on his behalf through The Dream Connection, a Knoxville-based non-profit organization with a mission to fulfill the “once-in-a-lifetime dream come true” of children between the ages of three and eighteen, with life-threatening or chronically debilitating illnesses in the East Tennessee community. Amy’s wish was for mobility and therapy equipment that would improve Elijah’s comfort, independence and quality of life.
“When Dream Connection (DC) originally met with Elijah’s family, his mom Amy shared with us that his life expectancy was around 3 years of age. He has a rare form of muscular dystrophy called Walker-Warburg Syndrome, which affects not only his muscular tone and mobility, but also causes vision issues that usually lead to blindness, breathing issues, and various other neurological anomalies,” said Michelle Peck, a Pediatric Nurse Practitioner with Dream Connection.
The items Amy specifically requested included the Easy Stand, ARK’s Z-Vibe® Tip Kit, Skillbuilders 30-1630 Full Support Swing Seat with Pommel, Rope, Small (Child), Medical Seat2Go Positioning Seat by Wenzelite, a video projector to enlarge videos for his vision impairment, a car seat, season passes to the Aquarium, and a medical bath seat.
“The items she most wanted were the stander and the car seat because Elijah has no ability to sit or stand on his own, and has spent his entire life being propped up,” said Peck.
The Dream Connection partnered with National Seating & Mobility, the leading provider of complex rehabilitation solutions and fastest growing accessibility company in the U.S., to provide the easy stander and car seat for Elijah, and secured the remaining items from additional donors.
“NSM was honored to partner with The Dream Connection to provide equipment for Elijah,” said Jim Parnell, NSM Assistive Technology Professional. “It was so moving to see first hand how this equipment affected Elijah’s quality of life.”
“Elijah has been such a joy to get to know,” said Peck. “One of the first things Amy said to me was that he brings a light to everyone who meets him, and he absolutely does.”
Elijah has already faced a multitude of health challenges including seizures, chronic lung disease, and vision and hearing impairments. He has one kidney and received a tracheostomy last year. In addition, the family’s home was destroyed in a storm last year, forcing them to move. But through it all, he remains a happy child.
“He loves music. He loves to watch movies. He loves singing,” Amy said. “Now he is really enjoying seeing the world from a different perspective and it’s really amazing.”
About The Dream Connection
The Dream Connection, Inc. is a non-profit organization fulfilling the “once-in-a-lifetime dream come true” of children between the ages of three and eighteen, with life-threatening or chronically debilitating illnesses in the East Tennessee community. The organization directs 100% of contributions to fulfilling the dreams of the children it serves. As the only organization of its kind in East Tennessee, The Dream Connection is the result of a group of volunteers who realized the need for an organization dedicated to fulfilling the special dreams of children battling life-threatening or chronically debilitating illnesses. For more information about The Dream Connection, visit dreamconnection.org.
About National Seating Mobility
National Seating & Mobility is the nation’s premier Complex Rehab Technology Solutions provider, partnering with physicians, therapists and clients across the U.S. to design customized innovative mobility, rehabilitation and adaptive product solutions for individuals with disabilities. Founded in 1992, the company has grown from five locations to a national network of professional Assistive Technology Providers (ATPs). National Seating & Mobility has earned the highest professional accreditation from the independent, not-for-profit, The Joint Commission. As preeminent accrediting body for U.S. healthcare organizations, The Joint Commission maintains unrivaled industry standards. For more information visit nsmseating.com.