Joey is our angel that shared 28 months with us. He was the second of our three children, that still has unbelievable impact on all of us, especially his older brother, Richie and his younger sister, Amy.
While with us, Joey showed us determination and a stubborn streak that have rarely been rivaled. We were overwhelmed during this time as young parents to provide care for our Joey and his two active siblings. This was a time that we felt we were juggling many of life’s balls all at the same time. When Joey was born, the CdLs Foundation was just a dream of a couple of visionaries and Cornelia de Lange Syndrome was considered extremely rare, something many Pediatricians had only read about.
Although he was with us for a very short time, he gave us a lifetime of love and tender, powerful memories. All of us find being involved with the Foundation, in various ways is a means to keep Joey’s memory alive and hopefully provide encouragement to young families living with a CdLS child today.