By Traci Chapman
To say life’s journey has been one of twists and turns for Mike and Maggie Cook would likely be an understatement; to say they have grown stronger both individually and together would definitely be one.
That strength faced its strongest test – and got a deepening boost – seven years ago with the couple’s son Matthew. For three years faced with significant developmental disabilities, countless medical appointments and tests, the family finally had an answer about why Matthew didn’t speak or walk, why his angelic smile sometime masked a terror around new people, why he struggled with sleeping patterns and other issues not usual with a child his age.
That answer was Angelman Syndrome, a rare a complicated and rare neurodevelopmental disorder affecting Matthew’s movement, speech and balance. Doctors told Mike and Maggie their son would likely never walk or talk, could have seizures and a host of significant health issues, requiring care for the rest of his life.
It was a daunting diagnosis but it was also a relief, Mike said, because it was an answer that had eluded both Matthew’s parents and his brothers Trenton, Jeff and Mikey. While Jeff and Mikey were grown and on their own, it was especially challenging for Trenton, whose youth has been inexorably tied to Matthew’s progress.
“As a family this has deepened our love and commitment to each other, including Jeff and Mikey, but one of the things I am proudest of is Trenton and the love and care he’s shown Matthew,” Maggie said. “He is always so patient, so kind, so caring – and a lot of kids would be jealous of the attention we have to give his little brother.”
That patience was a trait Trenton came by honestly, as Mike and Maggie worked to do everything they could to make Matthew’s life as normal as possible – and, as time went on Matthew defied the odds, not only learning to walk but also speaking a few words, supplementing verbal skills with signing.
“We don’t often share with others, even close friends and family the depths of what we go through when it comes to Matthew,” Mike said. Our priority is making sure he gets to live his life to the fullest and to help raise awareness about how truly amazing the individuals with special needs – Matthew has helped us see it clearly.”
Their journey with their now nearly 7-year-old prompted the family to help share what they’ve learned with those who might not know about Angelman Syndrome, as well as reach out to families who have special needs children. Thus, the “camper campaign” was hatched, Mike said.
“We’re hitting the road on Saturday, July 13, on a road trip across the United States,” he said. “We will be stopping to meet other families that have been touched by AS, as well as doing all we can to raise awareness about AS due to so few people having ever heard of it.”
Along the way, the Cooks will post trip highlights on their blog, https://angelman.blog/; as part of their travels they plan to attend Angelman Syndrome Foundation’s family conference, set for July 24-27 in Louisville, Kentucky.
“We wouldn’t change Matthew for anything but we will do anything to change the world for him – the more people that know about Angelman Syndrome the easier it will be for Matthew and others to be understood how they are not different than others but different like others,” Mike said. “We’re hoping people back home and along the way will read our blog and pass the word so we can help others understand what AS is and how it affects people dealing with it.”