Derek Lyons was once able to perform most normal, everyday functions.
“My son, Derek, was born full term. He was, we believed, a perfectly healthy child,” his mother, Melissa, tells us - seated next to her son with her hand firmly planted his lap, as he fixates on something off in the distance.
When Derek was just three weeks old, he began experiencing complications indicative of a problem far beyond his mother’s ken. Four long months later, he was diagnosed with the incredibly rare Agenisis of the Corpus Callosum.
Despite his diagnosis – and the many struggles that accompanied it – Derek was able to brush his teeth, feed himself, and even play video games like his siblings.
“It really felt like 14 years of hard work – various kinds of therapy - was going to allow my son a relatively normal life,” says Melissa. “He was a happy, funny kid.”
Soon, Derek’s condition took a turn for the worst.
“One day, he complained of a headache. For us, a headache is usually nothing more than an inconvenient interruption to our day,” says Melissa of the moment everything would change. “But for my son, it meant the end of everything.”
Today, Derek, at 18 years old, is non-verbal.
He can no longer speak, eat, and engage in many of the daily activities most others can. He is entirely dependent on Melissa, who joins ‘For the Hayters’to share both his and her stories, and tells us how she’s reconciled saying goodbye to the old Derek, and hello to the new one.
Tune in to a special, close-to-home episode of ‘For the Hayters’tomorrow to watch Derek – and Melissa’s – stories unfold, and to learn more about Agenisis of the Corpus Callosum.