Parents adopt four kids with rare skin disorder

Kadee Troop and her husband both come from large families and knew they wanted one as well. After six years of marriage, however, they had not yet conceived, and decided to create their large brood through adoption.

When an agency contacted them about a baby boy, they immediately went to see him.

The infant had epidermolysis bullosa, a group of rare genetic diseases that cause fragile skin and blisters after even minor trauma or injury to the skin. It can be mild or cause severe complications.

“I took one look at him and I knew he was mine,” Troop said Thursday on TODAY. “We watched his dressings get changed, and it was horrifying to see.

“But the voice in the back of my head kept saying, ‘It’s OK. You can do this,’” she continued. “This baby was our Zack, and after 11 years, thousands of dressing changes, dozens of surgeries and countless sleepless nights, it is absolutely OK.”

The first few years of Zack’s life were very rough. But before he headed off to kindergarten, Troop and her husband, Brad, who live in Bountiful, Utah, decided he should not be an only child. They adopted Elizabeth, now 7, and later, Charleigh, 2.

“But I still felt like I was still missing someone,” she said.

A friend told them about a pair of sisters with the disease, and the couple next welcomed home Jayne, 3, and Elle, 2. Just recently, they also opened their home to the sisters’ 1-year-old brother, Alex, who also has the disorder.

“Life is crazy,” Troop said, “but there’s nothing better than a house full of kids that are happy and joyful.”

Jamie Silver, a New York City mom to a son with the same illness, also shared with Kathie Lee Gifford and Hoda Kotb about what life is like for their children and their efforts to help others.

Silver and her husband, Alex, started a foundation named after their son, 6-year-old Jackson, to fund epidermolysis bullosa research. The Jackson Gabriel Silver Foundationhas raised $2.5 million.

Silver talked about the daily wound care that kids with the disorder require.

“They’re in a lot of pain,” she said. “For us, one of the hardest parts is that in order to care for our children, we need to inflict some more pain on them. Painful baths and bandage changes every day.

“Currently, that is the way we care for our children, but we’re working really hard, the Jackson Gabriel Silver Foundation, to advance treatments and cures,” she said.

Kotb asked Troop if it was somehow easier to raise four kids with epidermolysis bullosa because she is familiar with the special care needed.

“We’re an EB family,” she said. “EB affects every aspect of our lives, and it means there’s just a lot of things we can’t do, and then there’s a lot of things that we can do,” she said.

Her kids want to have fun and be active, and she’s there to protect them.

“Our job is to just run defense and be there to pick them back up,” she said.

Kotb asked Troop what led her and her husband to adopt more children with the illness.

“With Zack, it was just this miracle, that we found him and he found us,” she said. “We knew we wanted to have more children eventually, and just God’s hand came together and found these beautiful children for us.”

To help pamper these dedicated moms for Mother’s Day, the fourth-hour hosts treated them to gift certificates from Spafinder Wellness 365. Jackson received Lego sets, and The Company Store provided all of their children its softest bedding, along with towels and beanbag chairs for the older kids.

Lisa A. Flam is a news and lifestyles reporter in New York. Follow her on Twitter.