5½-year-old girl from Windham makes video to inspire others with rare genetic condition

Maine girl fights through disorder to enjoy life.

WINDHAM, Maine (NEWS CENTER) — So many times we hear stories about the terrible things kids are doing on the computer while you're not watching. But every once in a while, a child is able to use technology to make a difference. And this is one of those stories.

Like a lot of 5½-year-olds, Kate Woodside loves playing Legos with her older sister and making silly videos. Getting through the day is really hard for her, though, because she has a rare, genetic liver disorder known as Alagille Syndrome. According to the Alagille Syndrome Alliance, the disorder only affects 7,900 people worldwide. Kate's parents don't know any other Mainers who have it.

Kate has to take a handful of pills twice a day to control her symptoms. And still, she suffers insatiable itchiness all day long. Her mother says Kate has scratched herself until she's bled many times. Kate describes her condition as "Really hard because I think that I'm the only person that has Alagille. No one else knows how I feel when I'm itchy."

One afternoon, though, Kate was recording some videos on an iPad and decided to reach out to other kids like her. She said, "Hi. My name's Kate and I have Alagille. This is for other Alagille kids … I know that we have itches and we have to take pills. It's hard, right? But we can handle it! We're old enough to handle it! Even if you're three or two or one -- or 5½ like I am! We have -- we can take over the world. We can make the world a better place! Even if we have Alagille, it doesn't matter…"

Kate's mom, Chanda Turner, said she saw the video after Kate went to bed and, "I cried. And I kind of ugly cry every time I watch it."

Turner asked Kate if she meant for the video to be posted online, and Kate said yes. So, on Rare Disease Day (Feb. 28), she posted it on the family's Kate's Krew Facebook page, devoted to the fight against Alagille. Kate has been so happy with how people rallied to her, especially when a girl in Nevada posted her own video in response.

"Someone was inspired by me," Kate said. "And I liked it."

Below is Kate's full video from the Kate's Krew Facebook page:

You can find out more information on Alagille Syndrome at alagille.org.

Copyright 2017 WCSH


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