Wayland Teen With A Rare Skin Disease Defies Odds
Updated: Saturday, July 13 2013, 01:59 PM EDT
Wayland, N.Y.— More than a decade ago, 13WHAM viewers were introduced to three-year-old Taylor Kirin. The toddler had a rare, genetic disorder called Epidermolysis bullosa (EB)— a condition where the skin is so sensitive, a touch or bump could cause the skin to fall off and blister.
Even then, little Taylor was somewhat of a miracle. According to her mother, Sandi Kirin, Taylor wasn’t supposed to live past the age of two.
But today, Taylor is a beautiful 15-year-old. Like most girls her age, she loves music, putting on make up and going shopping.
“I am like a regular kid, but my skin is different,” Taylor explains.
Having EB means that Taylor is missing the fibers in her body that anchor her skin in place. Her skin is very fragile-- so much so that EB is often called the “butterfly disease” because of how delicate the skin is. She even gets blisters on her eyeballs because of the friction from rapid eye movement while she’s sleeping.
“I have a lot of open [wounds] covering my body,” Taylor said. “I have a lot of blisters. It's always a fight to keep them healing and keep the infections down. That's the goal.”
The infections can be dangerous and deadly. In order to ward off infections, Taylor has to wear thick bandages 24/7, all around her body.
With the help of her mother and a nurse, she changes the bandages three times a week after taking a bleach bath. Sometimes she has to put vinegar on the wounds to keep the infection down. The whole process takes six hours and is excruciatingly painful. Taylor has to take pain medication to manage the pain.
“I think the hardest part is to see your child in so much pain,” Sandy Kirin explained. “It’s something that you can’t control or help.”
Because of her disease, there are many things Taylor cannot do.
“I can't go out and run. I can't do sports. I can't go to school.”
Taylor says she’s always wanted to do gymnastics, but with her disease, that sort of physical activity is out of the question. Sandi recalls once, when Taylor was younger, she fell off the swings. The skin on her entire back peeled off from the friction. Sandi says she had to pick pieces of grass and dirt out of Taylor’s back.
Instead of sports, Taylor eventually found her passion in art. She loves to paint so much, she goes to school with a nurse for an hour each day just to take art lessons.
Sandi says she can tell Taylor gets upset knowing that there are limitations to what she can do.
“When you're watching children play or do things, I can see how much bothers her and hurts her because she wants to be able to do things everyone else does.”
Taylor admits that last year, she had self-pitying thoughts. She often asked, “Why me?”
“I felt so bad for my self,” she said. “I saw all the bad things. Why me? Why did this happen?”
Eventually, with the support of her family and friends, Taylor began to have a new outlook on life.
“I had to make a conscious choice to think, ‘This is what I have and I have to deal with it’. There are a lot of bad days, but that’s what makes you appreciate the good ones. The best thing to get me through this is the support system I have. My family, my nurses and my friends—all of them. You can’t live with EB without having a really good support system.”
Taylor hopes that her story of survival is an inspiration to other children battling serious illnesses like hers. She also wants to reach out to others who may have EB.
“I just want to spread awareness and if any kids with EB who watching my story, I want them to know that they are not alone.”
To the family and friends who know and love Taylor, she’s already an inspiration. Her determination and will to live has been uplifting.
“I see her as a miracle,” Sandi said. “I never dreamed that we would come this far. Everyday is a gift. Without her toughness, her drive and determination we wouldn't have made it this far.”