Extreme Makeover: Home Edition has done it again with another inspirational story about your everyday family just trying to live their life. At first glance, the Starkweather family looks typical enough, the truth is they’re anything but. Ethan, the youngest of this family of five, suffers from a rare genetic disorder called Prader – Willis. According to medicinenet.com, this condition affects the whole body- primarily presenting itself in weak muscle tone and a propensity to overeat. This is because the hypothalamus part of the brain doesn’t function properly telling you when you’re full..
“It’s a very odd thing to deny someone food when they say they’re hungry, but we have to to save his life,” says his mother, Amy.
Caring for her son is a full- time job; as a result, she stopped working to stay home and monitor his health and therapies. Since Ethan’s diagnosis, the family has had to make their share of sacrifices. Their father’s focus once on house repair turned to spending time with family and friends. His brothers do their best to limit their food intake in front of Ethan.
Sounds depressing, right?
Not really. Despite his disorder, Ethan is reaching out to spread the word about the disorder and help others in similar situations. His work with the Make-A-Wish foundation has raised hundreds of dollars.
“It has meant so much to Ethan to help other kids; he calls it his job!” she said.
During the house transformation, the family traveled to Disney World resort in Orlando, Florida. Guest renovators included country singers Sheryl Crow and Miranda Lambert. In the plans for the home: a security coded pantry, a fully equipped therapy room and aquarium themed room for Ethan, an aerospace- themed room for Ryan, as well as a rocker style room for Jared
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Citation for TV program: “Extreme Makeover: Home Edition” ABC Channel 7 WJLA, 9 May 2010