Taking Compassion for Angelman on the Road
Vol.5 Issue 8
Maggie and her family share their blog at: https://angelman.blog

Like many of the exceptional employees of Enterprise Services Center (ESC), Maggie Cook spends her work days diligently processing data, conducting fiscal analysis, and producing financial statements and reports. She works in AMK-333 as an accountant in the Reporting and Analysis Branch, and while the day has its own challenges, her personal life has its unique qualities as well.

It was in 2012 that Maggie and her husband, Mike, were married, and they quickly set about the various tasks of building a home together and raising their family.

"Having three other neurotypical kids, at one years old, we knew there was something wrong with our youngest boy," said Maggie. This youngest boy is Matt, who is about to turn eight, but at the time, as Maggie said, "We realized he wasn’t developing and reaching the same milestones as his siblings did at the same age. Our family had all the medical testing done to find out what was causing the delay but not until we had genetic testing done did we finally get our diagnosis." At that time, Matthew was three years old.

"It’s the feeling that, yes, we are struggling, but we’re not alone. With Angelman, 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.
Maggie and Mike said they were blown away by the reception they received from people on their journey, both from those affected by Angelman and others who weren’t. "People said, ’Saw the back of your camper; we want to donate,’" said Mike, "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. And it wasn’t like, ’Gosh, get away from me.’ It was like, open arms, ’tell me all about it; let’s learn about it.’"

That diagnosis was Angelman Syndrome. It’s a complex genetic disorder that primarily affects the nervous system, and it typically results in delayed development, intellectual disability, severe speech impairment, and ataxia (problems with movement and balance). It’s relatively rare; only 20 people in the state of Oklahoma are diagnosed with the syndrome.

"When we received the news, we were told he would never walk or talk, and that he would have overall cognitive issues," said Maggie. "But at seven years old, he’s walking, running, and climbing. Although fully mobile, he does have balance issues from time to time, and he communicates using sign language, PECS (Pictures Exchange Communication System), and an AAC (Augmentative Alternative Communication) device." These methods help because, "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."

"He only sleeps four hours a night," said Mike. "He goes to bed about 8 pm, and then by midnight he’s up. We take turns sleeping with him, so at least one of us is up with him all night."

Maggie and Mike were recently featured on a local news channel and they also share a blog to continue raising awareness about Angelman Syndrome.
Maggie with her son Matt.

While Angelman has led to many challenges and demands, Maggie and Mike have not let this slow them down. In fact, they’ve found themselves embracing it and working hard to not only face it but also raise awareness where they can. This summer, they decided to take a tour of the country and visit other families dealing with the syndrome. Towing a specially modified camper, they visited 16 states over 22 days, driving over 5,000 miles. Their big stop was in Louisville, Kentucky for the national Angelman Syndrome Foundation Research Symposium and Family Conference in July.

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