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

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Angelman Syndrome Redefines Happiness For Md. Family

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Jake laughs at the sound the balloon makes when he squeezes it.
Lauren Ober
Jake laughs at the sound the balloon makes when he squeezes it.

It's hard to pin down what makes a happy life. Is it financial stability? Professional success? Great friends? A loving partner? For Michelle and Dustin Sclater and their family in Jefferson, Md., happiness is all about chromosomes. Or in their case, the lack of a chromosome. Their 9-year-old son, Jake, has Angelman Syndrome, a complex genetic disorder that affects one in 12,000-20,000 people. One of the main characteristics of the disorder? Happiness. Producer Lauren Ober talked with Michelle Sclater about Jake's illness, the importance of laughter and what it takes to lead a happy life.

On how the disease affects Jake: "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, 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. Basically every way of his life it effects in some way."

On happiness as a symptom: "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 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, the chromosome has some effect on your disposition. In their case, it makes them happy. I can't explain it. I think it's great."

On the importance of laughter: It's actually been an amazing thing because I don't think 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. 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."

On how they came to the diagnosis: Jake was not hitting all his milestones. We started to realize he was moving further and further behind, he wasn't sitting up and doing the things he should do. We went to the geneticist, and she was pretty sure he had Angelman based on one other case that she had. So we tested him, and then we found out later at 12 months that he had Angelmans."

On managing expectations: 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 are what you perceive to be a happy life. 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 is such a great kid that I'm so glad he's in our life because he's brought to us so many things we wouldn't have ever recognized. And so many people we've met and things 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. So I think happiness is what you make out of life."

On perspective: "Jake brings to us a definite sense of perspective. We don't take anything for granted. We see him and his daily struggles and it allows us to realize you can't sweat the small stuff."

[Music: "Shiny Happy People" by Piano Tribute Players from Piano Tribute to REM]

Photos: Angelman Syndrome


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