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The Butterfly Boy

The Butterfly Boy

Airdate: 10/01/2010

7-year-old Zac Troop from Bountiful, Utah suffers from a rare skin disease called Epidermolysis Bullosa, or EB, that causes his skin to easily blister and fall off. He's been called the "Butterfly Boy" because his skin can rip just like a butterfly's wings.

His mother Kadee carefully wraps Zac in bandages from head to toe to protect his skin.

"It's what we have to do to keep him healthy," she explains.

Zac says, "You have to be really careful around me because I have very fragile skin."

Zac's morning starts before sunrise with a bike ride. The sun's heat causes blisters so he rides before it gets too warm.

"Even just pedaling will most likely cause blisters on the bottom of his feet, but he's a little boy and he wants to get out and do things little boys do," Kadee says.

Next he's off for a quick game of hide-and-go-seek. Even this innocent childhood activity must also be limited.

Kadee says, "It's about 8:30 and it's already too hot for him. He will have to come in and cool down."

Zac heads directly to his home's air-conditioning vent for immediate relief.

His least favorite part of the day comes when his bandages are changed and his mom stretches his swollen scarred joints to keep them limber.

But Zac never complains as he bravely faces spending much of his young life wrapped in bandages.

"Zac as a person is not fragile. He's incredibly strong. He's amazing," says his mother.

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