Beyond Pain

BEYOND PAIN
Parents of daughter born with rare skin disorder look to God for relief and joy

By Alex Murashko

Noelle Hermes, 5, has epidermolysis bullosa.

IRVINE, CA (ANS) -- Gus and Suzy Hermes had to make a choice when it was discovered that their daughter, Noelle, was born with a rare genetic disorder that makes it difficult for her skin to stay on most of her body.

When doctors delivered Noelle by C-section they found that she did not have skin on half of her legs, Suzy said. When they went to wipe off Noelle's face, the skin came off. Placing a suction tube in her mouth to remove fluid caused the skin that lined her mouth and throat to detach.

Gus said that although the doctors tried to look calm he "could see that panic was written all over them."

It took doctors nearly two days of research, starting on the internet, to find that Noelle had one of the more severe forms of epidermolysis bullosa (EB). The disorder produces a mutated skin that is so fragile that it can blister or sluff off from just slight friction resulting in large blisters and sores.

It was two months before Noelle could go home.

Noelle's torso is always wrapped and bandaged.

Five years later, on the Hermes living room carpet, Noelle is playing music on a small harp and her big brown eyes and wide smile defy her struggle with EB. Her parents recall the choice they made and still make every day, they said, to turn over Noelle's disorder and their trying times to God.

"Those first few days were the worst days of my life," Suzy said. "I just wanted to run out of the hospital and just think I was having a nightmare that I was going to wake up from."

Instead of running, Suzy said she decided to trust God with the situation.

"The whole thing about us having a choice to make is so true," Suzy said. "You really have a choice - do you want to be bitter and turn away from God or do you want to allow it to make you better?

"I don't want to be bitter. That doesn't do anything for our marriage. That doesn't help Noelle," Suzy said.

Epidermolysis bullosa (EB) is a rare skin disorder.

About one-third of Noelle's body is covered with open wounds, much like the wounds of a burn victim, Suzy said. Noelle wears bandages and wrapping on her legs, feet, and torso every day.

The bandages and wrappings need to be replaced every other day. The process is a painful one that takes the family two hours and involves a bath with open sores.

Despite the almost constant pain, Noelle's joyful expression on this day is a reflection of her daily attitude, her parents said. In the beginning, Gus was not sure he could cope with caring for his daughter's wounds.

"We had to learn the whole concept of being completely sterile and the different types of dressings that you put on," Gus said. "I was like no way. I'm squeamish. I can't stand looking at medical things on TV. I can't handle it and yet God has given me the grace to be able to handle her."

Because food taken in the mouth can cause sores in her mouth and throat, Noelle needs to be fed with a feeding tube that attaches at her abdomen. She gets hooked up with the tube three times a day for an hour each time and then at night when she goes to bed.

Suzy said she struggled with looking too far into the future as well.

"If you would have told us before she was born about what we do now, like changing her feeding tube button and stuff we do I would have said that you are out of your mind," Suzy said. "But it's just evidence of God giving you the strength to do things when you need it.

"Just thinking back, it was so scary in the beginning. Now it is just so part of our life that it seems normal." The commonly used expression, "Take it one day at a time," is something the Hermes appreciate even more these days.

"One of the things that God has really taught me is the whole thing of taking it a day at a time," Suzy said. "It's so funny. You hear all these things and you know them, but when you go through them, boy, do they take on whole other meaning.

"I can't go into the future. I have today. I just need to thank God for what we have today," Suzy said.

Guz and Suzy, both 43 years old, work as domestic missionaries for Athletes in Action, a ministry of Campus Crusade. They are campus directors at the University of California Irvine. Their work involves telling athletes at UCI about Christ, leading Bible studies, holding retreats, and discipling, they said.

They are able to work out of their home much of the time and this enables them to more easily care for Noelle and their other two daughters, Brenna, 10, and Kalena, 8. The children are home-schooled by their parents.

EB is an inherited disease that affects less than 10,000 children and adults in the United States, researchers say. Most doctors and nurses can work a lifetime and never bump into this condition. Research is being done to find a cure, but more needs to be done, the Hermes said.

The parents, with help from others, have established the Noelle Hermes Foundation. The foundation's board members want to assist the Hermes family with medical expenses. Although the family's insurance has covered much of the cost, there is still plenty of out-of-pocket expenses, the Hermes said.

The foundation, which is just three months old, also wants to raise money for EB research. In addition, Suzy said she would like to see that funds go to help other families who have a member with the disease. The costs can be very high, she said.

Getting past the emotional anguish of having a child with EB required that the Hermes' faith in God grow to a level they never imagined, they said. As successful long distance runners in college, both said they were previously too performance orientated.

Gus and Suzy now use their experience with Noelle to help others in pain of all sorts and to talk about God, they said.

"All of us are trying so hard to get attention and love from people by all the different things we are doing," Gus said. "We are trying to achieve and be successful in business. Get the right husband. Get the right wife. Get the right house.

"If you are an athlete you achieve something to get people to look at you and notice you. We just want that love and affection and it's never going to satisfy us," he said.

"The only place that really comes from is God. But you can talk and talk about that and have it up here (in your mind), but I had never experienced it in my life. Now I understand it and it is completely life changing."

Note: The Noelle Hermes Foundation is holding a fundraiser, "Amazing Race for the Cure of EB" in Newport Beach on May 20. More information on this event, the foundation, and Noelle can be found at www.noellehermes.org. Sign-ups for the event can also be taken by calling Rocky Whan at (714) 473-2848.

Alex Murashko is a freelance journalist living in Southern California. He has a Communications/Journalism degree from California State University Fullerton. He has been a reporter for the Los Angeles Times Orange County edition and the Press Enterprise in Riverside. He is currently employed with a company that publishes an online shopping guide. Email: AlexMurashko@yahoo.com.