Love, patience help Bellevue family battle rare skin condition

Adopting a child from Africa had been a life-long dream for a Bellevue family. When they finally got their hands on a baby boy from Ethiopia they learned a devastating diagnosis. It was one that meant simply holding their son could cause him pain.

When it comes to parenting, some mom’s and dads just know.

“I have always wanted to adopt for my entire life. I’ve always wanted to adopt,” Lacey Yantis said.

Her chance to adopt came from an unfortunate miscarriage, which made her think even harder about her dream to adopt.

“In that process of, sort of, soul-searching and trying to figure out what the why of that baby was, I realized that I think it’s time to adopt. We’d always wanted to it just seemed right. We always said our fourth child would be adopted. It made sense. So, I got up the nerve to ask my husband and he said, ‘yeah!'” Yantis said.

She got to work right away, knowing that Africa would be where her child came from. Her chosen country? Ethiopia. Most adoptions are painfully long, but this was meant to be.

“I was kind of on pins and needles for three months waiting because it can happen at any moment,” Yantis said.

The call came in January and they were told his name was Ermias, and little more. What they weren’t told was how sick their little boy was. The adoption agency glossed over the fact that he had a puzzling skin condition and instead gave Lacey their best guess.

“(The agency) said that he had hypopigmentation so, lack of pigmentation on his hands and feet and blisters from an adverse reaction to a sulfa drug (antibiotics),” said Yantis.

She immediately contacted Seattle doctors with the little information she was given by Ethiopian officials to see if she could find more answers.

“From what I heard from doctors, and I queried more than one, they said, ‘Yeah, that’s an extreme sulfa drug reaction, but it’s not implausible, and even if it’s not it could be something else, but it’s probably treatable.’ There was nothing to suggest it was something major in the paperwork,” said Yantis.

They were soon on a plane to Ethiopia, and armed with information on Ermias’ possible condition they thought they knew what to expect.

Their host took them through the usual Ethiopian customs and then finally they were brought to the orphanage.

“I was not prepared in any way, shape, or form for what we would find when we actually went into the orphanage for the first time. He was covered in blisters, some oozing puss or fluid, some that had dried were like purple bands around his fingers,” Yantis said, tears building in her eyes as she recounted the story. “He was clearly running a fever. He was not well. He was 10 months old but truly an infant. Not just because he had been institutionalized, but also he was just so sick – and had been so sick for his entire existence.”

It became clear that the journey for adoption became a mission to save this little boy’s life.

Once Yantis arrived in Seattle, she brought Ermias to Children’s Hospital. He had a fever of 104 degrees and was resistant to multiple antibiotics thanks to the cocktail of drugs he was given in Ehtiopia.

Doctors here got him what he needed to threat the infection giving him the severe fever, but then came the diagnosis.

“Epidermolysis Bullosa,” said Yantis.

Most refer to it as “EB.” It is incredibly rare, affecting only 30,000 people in the U.S. The connective tissue disease means Ermias was missing Keratin or Collagen from the layers of his skin. It’s not just painful, it’s debilitating.

“Essentially if you think of the layers of skin like Velcro, the one layer is missing the hooks of the Velcro so [the skin layers] slide on each other so any friction causes a blister, like it would in you and me if we wore a tennis shoe,” said Yantis. “But for him it could be the seam of his clothing, it could be you picking him up, it could be him crawling, it could be him walking on his feet. All of those things cause blisters. The diaper around his legs. If you think about it, basically, daily life is causing him blisters, and then pain.”

There is no cure for EB. There’s not even a treatment. The now two-year-old’s nightly routine is unbelievable.

“Every night he gets a sterile bath so that the blisters soften and then we pull him out and he gets all of his blisters popped or lanced and then drained, and on any given day I’d say there’s somewhere between 10 to 30 blisters. We put on a series of ointments. He’s in a clinical trial at the moment. He gets that first and then he gets a clear, sticky ointment called Keragel and then Medihoney, which is sticky like honey, but has a naturally antibiotic, healing factor. It tends to soften up his wounds that way they won’t itch so much. Then, Aquaphor at the end.”

For his entire life, Ermias has only been able to sleep for 15 minutes at a time. The itching from healing wounds keeps him up and Lacey, too.

“It is so exhausting, it is so emotionally exhausting in ways that I can’t even put into words,” Yantis said.

Parents with healthy children are tired. So you can imagine Yantis reaching her breaking point. That’s when her unlikely hero emerged: Eddie Vedder.

The Pearl Jam frontman released a video in October throwing his support behind research for an EB cure.

When I first heard about it it was quit hard to grasp the intensity of the condition, it’s about the most insane skin disorder you can imagine,” Vedder says in the video, flanked by local EB patients.

Last week, Vedder held a concert at Microsoft headquarters for employees. They bid on tickets with all proceeds going to EB research.

“To see Eddie Vedder stand behind it and get Microsoft involved and sort of this power that is Seattle around this idea that we could potentially find a treatment or a cure for EB is huge. It feels… I felt hope again and I rode that cloud of hope for 48 hours, which is really unusual,” Yantis said laughing.

Hope could be the most powerful drug in this fight against EB. Lacey knows life won’t get easier anytime soon. But talking about it and sharing Ermias with you means she doesn’t have to go it alone.

“You have to be frank about it, you have to talk candidly about it because there are other women out there that are also walking an uphill battle, whether it’s a special-ed child, a special needs child, a medically fragile child, or a teenager battling drugs, we’re all in the trenches together,” said Yantis.

Learn more about EB and how you can help here.