Angelman Syndrome Redefines Happiness For Md. Family (Transcript) | WAMU 88.5 - American University Radio

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Angelman Syndrome Redefines Happiness For Md. Family

MS. REBECCA SHEIR

00:00:03
From Southeast D.C., we'll head up to Frederick County, Md. to the little town of Jefferson. That's where you'll find Michelle and Dusting Sclater, a couple for whom happiness is all about a chromosome or rather the lack of a chromosome. Their son, 9-year-old Jake, has a complex genetic disorder known as Angelman Syndrome. Angelman Syndrome affects one in every 12,000 to 20,000 people. And one of the main characteristics of the disorder? Happiness. Lauren Ober visited the Sclater family and brings us their story.

MS. MICHELLE SCLATER

00:00:38
My name's Michelle Sclater. I am the mother of Jake Sclater and he is nine years old and he had Angelman Syndrome. Angelman Syndrome is a genetic disorder where Jake is missing part of chromosome 15, and that presents itself in many ways. In his case he has seizure disorder, reflux, learning disabilities, and movement disorder. He has difficulty walking. He is non-verbal, but he's able to communicate a little bit. It's getting better now with the use of the iPad. But we work with him daily on every facet of his life, from walking to feeding to communicating his wants and needs.

MS. MICHELLE SCLATER

00:01:30
Angelman kids are very happy. They have a happy disposition. I don't know what causes that. I don't think the doctors know what causes that. There's something with that chromosome that affects your disposition. If we knew what that was, I'm sure they'd be capturing that and somehow doing a drug to get all these unhappy people happy again. And I'm sure maybe in the future they'll figure it out. But for right now, all they know is that piece of the chromosome has some effect on your disposition. In their case, it's that it makes them happy. And I can't explain it, but I think it's great.

MS. MICHELLE SCLATER

00:02:08
And it's actually been an amazing thing because I don't think that if he wasn't happy or if he was unhappy all the time, I think I'd be in much more of a state because I think he brings happiness to us by his smiles and his laughter. When he laughs, he makes other people laugh. Laughter is contagious. Everybody knows that. And so when he smiles and he starts waving at people in the store and they look at him, they have to wave back. And if they don't, he kind of scowls, like what's wrong with that person.

MS. MICHELLE SCLATER

00:02:39
Jake was not hitting all his milestones. He was moving further and further behind, he wasn't sitting up and doing the things he should do. We went to the geneticist. She was pretty sure he had Angelman Syndrome based on one other case that she had. So we tested him, and then we found out later at 12 months old that he had Angelman Syndrome.

MS. MICHELLE SCLATER

00:02:57
The internet is your best and worst friend because the first thing you do -- and the doctor tells you not to. Don't go on the internet and read all about this because you're going to get freaked out, but of course, the first thing I did was I went on the internet and I read all about them. And of course we were pretty devastated. It's still hard, but when you see these kids they're so awesome and they're so much fun.

MS. MICHELLE SCLATER

00:03:27
I think when you grow up and you say, I'm going to have children, I'm going to have a family, they're going to go to school, they're going to go to college, they're going to get married, all those things, I think, are what you perceive to be a happy life. And then when you find out that that's not exactly going to happen the way you thought, then you go through this period of woe is me, my kid's not going to do XYZ, and then you start to realize you know what, Jake is so happy and he's such a great kid, that I'm so glad he's in our life because he's brought to us so many things that we wouldn't have ever recognized. And so many people that we've met and the things that we do on a daily basis are totally different than what we would have done if we had lived in this little bubble of the perfect world.

MS. MICHELLE SCLATER

00:04:14
I constantly say, really, is that going to make you upset today? Really? You know, in the big picture of life, is that a big deal? And I think it just keeps you grounded to know that, you know, have this little boy. He struggles daily, but he keeps a smile on his face and you're thinking, well, if he can do it, than I can definitely do it.

SHEIR

00:04:39
That was Michelle Sclater talking about her 9-year-old son Jake. Their story was produced by Lauren Ober. We have more information about Angelman Syndrome and photographs of Jake and his family on our website, metroconnection.org.
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