NEWS

Mississauga couple to meet Michelle Obama

03/05/2013 11:20 EST | Updated 05/05/2013 05:12 EDT
A Mississauga couple is heading to the U.S. capital to meet Michelle Obama, after a video they made about their son's rare condition caught the eyes of the judges in a contest sponsored by the president's wife.

Keegan and Tanya Johnson created a video about their son Dante's condition, Prader-Willi Syndrome, a rare genetic disease which causes intense cravings for food without the cues to signal one is full.

They entered it in the Communities on the Move Video Challenge, sponsored by Obama and aimed at highlighting efforts to reduce childhood obesity.

"People with Prader-Willi Syndrome don't feel full," said Keegan Johnson, who is also the founding president and chairman of the Foundation for Prader-Willi Research Canada.

"And it's kind of hard to get your head around it, but they would literally sit and eat a meal and the feeling that comes through that says you're actually full and you should stop now, they don't get that."

Their video got roughly 56,000 votes and judges said it was an "exceptional achievement". The Johnsons will travel to Washington, D.C., to show their video to Obama in person on Wednesday and meet other families dealing with PWS.

The condition affects many parts of the body, leading to severe muscle weakness, and can lead to severe obesity, according to Toronto's Hospital for Sick Children.

Their sons, Dante and Denzel, won't be heading to the U.S. capital, but they are excited for their parents' trip.

The couple say they hope the visit leads to more research and eventually a cure for their son's disease.

"It's overwhelming," said Tanya Johnson. "Because, for such a small rare disorder, to get this national — international —attention, well, it's a dream come true."

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