Can you believe God to pull you through? They did.?

Beyond pain — Parents of daughter born with rare skin disorder look to God for relief and joy


By Alex Murashko — 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, a disorder that 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.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 hope to share her story and raise money for the newly established Noelle Hermes Foundation during the "Amazing Race for the Cure of EB" fund-raiser in Newport Beach on May 20."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."Open wounds and bandages


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 typically joyful expression reflects 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 its just evidence of God giving you the strength todo 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."Full-time missionariesGus 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, enabling 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.Shift in priorities


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 in painful circumstances"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."For more information about Noelle or the foundation, visit noellehermes.org. Sign-ups for the race may also be made by calling Rocky Whan at (714) 473-2848.


Published by Keener Communications Group, May 2006

Can you believe God to pull you through? They did.?
God's grace is sufficient! He loves us so much that he gave His son to die for our sins...past, present, and future. We recognize that we have sinned, ask Him to come into our lives and that we want to follow him, and we are reborn! New creatures in Christ. Sometimes we waiver and take a few steps back, but when we reach out to Him, miraculous things happen! Thanks for posting article.
Reply:Yes of course if you pray and ask for forgivness!
Reply:Amazing, huh? He can give us the strength to deal with anything.
Reply:God does not exist.
Reply:That's One Of The Many Advantages That People Who Love, Trust, %26amp; Serve God Have Verses The One's That Don't!.....Yes,...."With Trusting In God, All Things Are Possible". (Matt. 19: 26)...Keep Trusting God %26amp; Giving Him The Glory!
Reply:AWESOME TESTIMONY!!! MAY GOD BLESS THEM and MULTIPLY THEIR ANOITING! I PRAY AND DECLARE DEVINE HEALTH ON THEM,IN THE MIGHTY NAME OF JESUS!