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Ed Yeates ReportingWhen we get up each morning, we assume our skin will still be attached to our bodies. But that's not the case for a three-year old from Bountiful. There's a reason he's called the Butterfly Boy.
The tropical room at Hogle Zoo will soon be filled with exotic butterflies. But as always, we won't be able to touch or rub their wings. Zach Troop's skin, so to speak, is as fragile as butterfly wings.
We scrub, rub, scratch, scrape and pull our skin all the time, but if Zackery Troop does it, his comes off. That's why Mom has to be extremely careful. His bath is an infection free mixture of vinegar, chlorox and epson salts.
Kadee Troop, Zach's Mom: "You can't pick him up by his armpits or it will take off all the skin under his armpit."
Zach was born with Epidermolysis Bullosa. About 12-thousand in this country have it, but Zach has an extremely rare form that happens only one or two times in a million.
Ellen Roy Elias, M.D., Denver Children's Hospital: "The body is making an abnormal protein that normally should sort of glue the outside layer of the skin."
Brad Troop, Zach's Dad: "He had done what they call deglove it, which means he completely took the skin off his finger."
KaDee and Brad's life revolves around their son. Like a butterfly, his flight every day has to be almost touch free.
Brad Troop: "It takes a lot of patience for Zach to go through what he goes through, but it also takes us patience to see a little boy who tries to have fun, but falls apart."
In pre-school, an aide is with him all the time. Like other kids, can he go outside when the weather turns hot and sunny?
Becky Money, School Aide: "He can't. That's why there have been two air conditioners installed in this preschool, because he has to maintain temperature. It can't be above 75 degrees."
Every six months, Kadee takes Zackery to the children's hospital in Denver. Though the numbers are few, that is the regional center where they get treatment.
The Denver staff keeps an eye on each patient like Zach, concerned always with nutrition, rehab and protection for the body. Scarring can eventually take over the hands and feet, webbing everything together.
Compassion, the kinder side of humanity -- that's what KaDee and Brad say Zach has taught them.
Brad Troop: "We make him just as happy as we possibly can."
KaDee Troop: "I think Zach has taught our whole family to be more kind and more caring. He's just taught me how much we really have, and how grateful you are that your skin works every day and that you wake up and it's still on your body."
Kids with this serious form of EB seldom live past their early twenties. But Stanford is getting ready to test, in its early stages, an injection that might genetically modify the skin.
