MUSTANG, Okla. – A family from Mustang is making a summer quest to learn more and teach others about their son’s special condition.
The Cooks are like many other families, piling in the vehicle for a cross country summer vacation road trip, but their son, Matt, is unique.
Matt is the youngest of four boys. He’s about to turn eight, but when he was two, his parents noticed some signs.
“He wasn’t crawling, he wasn’t trying to walk, he wasn’t trying to talk. Compared to our other boys, we knew something was off,” said Mike Cook, Matt’s dad.
Matt’s doctor diagnosed him with Angelman Syndrome, a genetic disorder that affects Matt’s intellectual development, balance, walking, sleeping and speech.
“They can’t talk. It gets so frustrating for them because even though they have a disability, they want to be understood. They want to be conversed with,” said Maggie Cook, Matt’s mother.
This summer, Mike and Maggie Cook decided to take a tour of the country and visit other families with Angelman Syndrome.
They visited 16 states over 22 days. They drove over 5,000 in the specially modified camper.
They made the trip to learn, teach and raise awareness about Angelman Syndrome.
“All the kids have a very happy demeanor. He only sleeps four hours a night. He goes to bed about 8 p.m. and then by midnight he is up. So, we take turns sleeping with him, so one of us stays up with him all night. It was great to hear that, oh, he might be sleeping all night long in the future,” said Mike.
Their big stop was in Louisville, Kentucky, for the national conference.
“It’s the feeling that, yes, we are struggling, but we are not alone. With Angelman’s, basically, it’s a life-long taking care of kids. All kids, they have the right to be heard, they have the right to be included,” said Maggie.
The Cooks said they were blown away from the reception they got both from the special needs community but outside it as well.
“People said, ‘Saw the back of your camper, we want to donate, and we would give them shirts. We don’t want donations, we don’t want money. We want you to wear the shirt or educate others. It wasn’t like, gosh, get away from me. It was like, open arms, tell me all about it, let’s learn about it,” said Mike.
Click here to learn more about Angelman Syndrome and the Cook’s road trip.