Miracle Stories

Tyler Long: 2007

Fabry disease

Tyler Ross Long's life started earlier than most. As a premature infant, the Shannon Health team helped deliver him to a life full of fun and neverending opportunities.

Tyler is a fortunate young man. His mother, Michele, was aware of a genetic condition known as Fabry disease before he was born. At three months of age, she had him tested for the disease.

When asked about his favorite things about school, Tyler says: "I love math. I love addition and subtraction. I like to play with my friends at school. We like to play tag. I like to play with my sister." He also loves playing outside on his four-wheeler. He eagerly waits for his mother to tell him he can play on it—it's one of the best parts of the day.

Michele describes Tyler as a happy-go-lucky kid. "He's normal," she says. "You wouldn't know what was wrong with him by looking at him. He gets along with everybody and he's very easygoing—although he can be pretty hyper."

"I had Tyler tested when he was 3 months old, and we discovered he did have Fabry's," says Michelle. "Since the disease he has is very rare, we've been doing treatment for two years. I knew women were carriers of the disease, and since my mom was on dialysis three times a week, I wanted to start Tyler's treatment early."

The benefit of starting Tyler's treatment at an early age is that it hopefully will prevent kidney failure in the future. With Fabry disease, an enzyme is missing from the body that keeps fatty tissue away from the kidneys, heart and lungs. By starting treatments early, hopefully, the enzymes that destroy the tissues will be minimized so that Tyler can have a strong chance of growing up healthy. The unique part of Tyler's treatment is that his mother does the IV treatment with him, since she also has the disease. "I have the benefit of being the oldest pediatric patient in town," says Michele. "When Tyler and I arrive at the hospital, the nurses set up our IV fluid. The medication is supposed to clear away the fatty tissues that ultimately will destroy our organs. We have to do the treatment every two weeks for the rest of his life—or until researchers find something new."

"The playroom and Zach's machines provided by Children's Miracle Network make the visits less daunting for Tyler," says Michele. "All of the services make the hospital feel less like a hospital. Dr. Wehner made it possible for us to do our treatments together. It has made it much easier for me as a single mother. Tyler looks forward to the treatment because he gets to leave school, get his treatment and play."

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