Kadee and Brad Troop were married for five years. They wanted a baby. They were on vacation when they got the call. A boy was available but he had a rare genetic disorder. Within two days they had fourteen-day-old son and a host of challenges.
Zach is twelve now. He has EB (Epidermolysis Bullosa). An explanatory video describes EB as a lawn without roots: Zach’s top layers of skin don’t bind to the rest of his body. The ramifications are immense. Zach is easily bruised. Some wounds last a year or more. He’s prone to infection. His fingers and toes, arms and legs have to be wrapped every other day in sterile gauze to protect his fragile skin. Zach is also an eight grader, a member of the Student Council, a baseball player, and a Boy Scout. EB is an integral part of Zach, but it doesn’t define him.
Kadee and Brad found their rhythm in caring for Zach. Three years later they adopted Liz, whose birth mother abused drugs. They learned of a pair of twins with EB, and adopted Jane and Ellie. Then Charlie, another girl with drug related syndromes. Alex, now two, is Jane and Ellie’s natural brother, whom the Troops adopted when he too was born with EB. The most recent addition to their family is nine-month old Haley, also born to a substance abusing birth mother.
Kadee and Brad have seven extraordinary children. They are also inspirations of how to love and care for one another. Kadee says, “Seven is the limit.” Then she laughs because no one believes her.
I spent a Wednesday morning with the Troop family; Brad’s day off from his bakery delivery job. “I can’t think of giving it up because the benefits are so good. We pay $30 a month for health insurance. Our minimum health care costs are $1,500 per month if nothing goes wrong. Of course, something always goes wrong.”
The four children with EB receive specialty care at Colorado Children’s Hospital. Kadee explains, “They have check-ups every three months, but we often have to travel to Denver in between. We’ve been there five months of the last six.” The Troops bought a camper van that they park in the hospital lot when in Denver. “We thought about moving to Colorado, but our family is here. We need our family as much as we need our doctors.”
As we visited, rambunctious children climbed on each other and their parents. Once they got comfortable, they climbed on me too. They clamored for cookies and ran up and down the stairs. In other words, the Troop kids are remarkably normal. But Kadee and Brad lift their EB children with extra tenderness, and soothe their other girls with measured patience. Kadee says, “My EB kids face physical obstacles that everyone can see. My other three daughters have internal conflicts and impulses that no one can see. I worry about all my children, but I worry about them more.”
I wondered why the children were indoors on such a nice day until Kadee explained, “Children with EB have to stay cool. They can’t take temperatures above 75 degrees.” During summer the children stay inside all day, except for early mornings and evenings. “We have a trampoline in the back yard. They love it. The scar tissue contracts their muscles. I watch them jump up, and for a moment, they’re weightless. Nothing’s pressing against them.”
Kadee and Brad provide remarkable medial care to their children. It takes an hour and a half to wrap the three younger children every other day. But they’re also remarkable in allowing their children to be as normal as possible. Their Facebook pictures of Zach playing baseball inspire other parents of EB kids. He attended regular Boy Scout camp this summer rather EB summer camp. Zach is strident about being as much like other boys as possible. “If people have to make an exception of something because of EB, I don’t want to do it.”
There is no cure for EB; the majority of people afflicted die before age 30. But Kadee and Brad are hopeful that current research will not only improve their children’s prognosis, it will cure them. “Stanford is making skin grafts that are in human trials. The University of Michigan is producing more stable collagens to bind the skin. The objective is to repair or replace the faulty collagen. EB can be cured.”
Kadee and Brad wear their responsibilities as gifts rather than burdens. “We wanted a family. We met Zach and God said, ‘This is going to be okay.’ Then we took in our drug babies and our EB babies. If you look at the big picture, you think no way can we do this. It’s too much. But we take it one day and a time and we do it.”
How will we live tomorrow?
“Technology will make our lives better.” – Zach Troop
“We grew up watching the birth of computers and the Internet. Now we want everything – and we want it now.” – Brad Troop
“We will always be dependent on our medical system but there is so much hope. We are awakening to the damage we’ve done to our planet and our health. We are on the verge of amazing things. Tomorrow is going to happen, whether we prepare for it or not, whether we are optimistic or not. I choose to be optimistic. – Kadee Troop
September 9, 2015 – Sun, 75 degrees
I rolled through Crystal Springs and watched well-scrubbed children in khakis eat breakfast in chandeliered dining rooms before school. I pedaled through Clackamas and passed bands of Mexican American kids with T-shits pulled over tortilla bellies walking to school. In Gladstone three middle schoolboys buzzed by me on their skateboards. A fourth, with long blonde hair undeniably cool, sauntered along at his own pace. I saw my first gold leaves. The calendar pages register two more weeks of summer. But it is fall.
I passed the 45th parallel, halfway between the equator and the North Pole. I definitely felt warmer on the far side of the sign.
How Will We Live Tomorrow? 