Community helps boy with rare disorder build Halloween costume

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Friday, October 21, 2016
Boy with rare disorder builds special Halloween costume
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Jack Jack needs help to celebrate with a very special Halloween costume

The community is coming together to help a 6-year-old boy with a rare life-threatening genetic disorder celebrate Halloween.

Jack Jack and his mom Jessica both need the support of a wheelchair. When the family reached out to the community over Facebook for cardboard for his costume, folks were happy to help.


Jack Jack, as his family likes to call him, has KAT6A. It's extremely rare and carries with it a lot of complications, Jack Jack is obsessed with garbage trucks and spends hours watching videos of them on YouTube.

"He's just really super interested in it, and as we speak he's watching a trash truck right now," said Jack Jack's dad, Greg.

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His parents want to build him a garbage truck costume, which is a very big deal for the whole family.

"We really want to make everything special for Jack because he nearly died last year from bone marrow failure," Jessica explained.

Jack Jack had brain surgery by the time he was one year old. Jessica also has two rare conditions herself that cause frequent joint dislocations and a fast heart rate.

"For reasons we do not understand, they seem to have had to endure an abnormally high number of potential rare diseases coalescing on this family. We cannot explain why this happened nor do we even have any suspicious leads (particular environment etc)," said the family's doctor, Nicholas Katsanis, Ph.D. "A true medical mystery that has frustrated all of us for years."

"You learn to deal with it, but it's really such a huge adjustment for me," Jessica shared.

Jessica was diagnosed three years ago and now has to use a wheelchair. When she reached out to others online for cardboard for her son's costume, the response was overwhelming.

"It feels really good," Greg said. "You have a lot of people that's trying to help out something that's important to us, but they're making it important to them."

Jack Jack's family set up a Youcaring page for his medical expenses. Click here to find out more or donate.

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