Raising awareness, spreading support

Mustang’s Cook family personifies hope in summer trip

By Traci Chapman

It was about nine years ago the Cook family of Mustang welcomed their youngest son, Matthew – and little did they know that milestone would mark a change in their lives forever.

It’s a change that’s both helped define and determine a path for the family they never expected, one that’s led them to the forefront of what was once a mysterious disease shrouded in questions and which has now been brought out into the light in great part due to their efforts.

Matthew, now almost 9, was diagnosed with Angelman’s Syndrome, a rare genetic disorder that causes delayed development, problems with speech and balance, seizures and a host of other difficulties that can put a strain on families and caregivers.

But for Maggie and Mike Cook and Matthew’s three brothers – Trenton, Jeff and Mikey – those challenges have in ways have become gifts, a way to bond together more strongly in support of a little boy whose beaming smile and happy nature have made their lives immeasurably better, they’ve said.

It hasn’t been an easy road – for three years, the family struggled to find out what was causing significant unexplained delays in Matthew’s development. When the answer, Angelman’s, finally was determined, it brought with it a bleak picture – doctors told the Cooks Matthew would likely never walk or talk, could have seizures and a host of significant health issues, requiring care for the rest of his life.

That was a prognosis that could have been devastating to many families, and it hasn’t been simple, they said. But, with the “what” now known of what Matthew was facing came a determination to make not only their youngest son’s life, but all of their children’s lives, the best they could possibly be. And it was truly a family endeavor in which for about nine years none of them have waivered, Maggie said.

“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.”

Trenton was the son who most closely knew what day-to-day life with Matthew was like. While Jeff and Mikey were grown, Trenton was a partner in efforts by Mike and Maggie to make Matthew’s life as normal as they could – efforts that have been seen as almost a miracle by doctors and others who know the family.

Over the years, Matthew has struggled, but he’s also defied the odds, not only learning to walk but also going to and excelling in school, speaking and communicating through sign language. While he has issues sleeping and in social situations, he also has been able to be part of situations many others with Angelman’s Syndrome perhaps could not even attempt.

That lead the family to begin a new phase in their lives in the summer of 2019 – a tour designed to help raise awareness of the disorder, meeting other families impacted by it and in the process helping to expand the network of those who know the challenges – and the joys – of life with Angelman’s Syndrome.

“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.”

The family’s 2021 trip began just days ago, as the Maggie, Mike and Matthew hit the road with a specially wrapped “tiny trailer” and headed to Charlotte, North Carolina. There, on their first stop, they met a family of five whose youngest son, Nathaniel, is a 4-year-old also diagnosed with Angelman’s. It was a chance to share their experiences with Matthew with the Ravelo-Tecsons and to show them that they are not alone.

As the Mustang family continues its travels, they will post trip highlights on their blog, https://angelman.blog/.