Stem-cell transplants provide hope for family of blind girl
“This is totally uncharted territory. We don’t know what to expect. We don’t know what the end result will be and whether she will have some functional vision. But two months ago she had nothing, and now she can see light. That’s an incredible journey for one small person. It’s a miracle.”
The diagnosis
After Rylea was born, she had a few medical issues, including a blood-sugar problem, but it did not appear to be serious.
“We did not know anything was wrong until she was 4 months old,” Barlett said. “It was in January of 2002. A doctor noticed she wasn’t tracking with her eyes. He told us to make an appointment with a pediatric opthamologist.
“We thought she had a lazy eye. We expected the problem to be minimal. The doctor did an exam. A few minutes later, we are told she is blind and there is nothing we can do to fix it.”
Stunned by the news, she sought second, third and fourth opinions.
“It was the same diagnosis everywhere we went,” she said. “That’s when we took on this whole new world. We were still hopeful, though this was our worst experience with anything bad. We had a perfect baby girl. She was our princess, and something was wrong that no one could fix.”
They made trips to Children’s Mercy Hospital in Kansas City and other places in search of hope.
“There were a lot of learning experiences,” Barlett said. “We never gave up. Her being blind was never OK.”
Eventually, Rylea had seen all of the eye specialists her family could find. Brothers continued to see Rylea to check on the health of her eyes, but there was nothing he could do for her.
Brothers and the girl’s pediatrician, Dr. Fred Wheeler, of Joplin, were two of the only people to hold out hope for Rylea “when no one else did,” Barlett said. “I will never forget what Dr. Wheeler said to me when I talked to him about the stem-cell transplants. He said, ‘If there is an answer, this is it.’”
After encountering one wall after another, Barlett became frustrated, but she continued her search on the Internet for promising treatments outside the United States.
“I looked for help in India, Thailand and throughout the world — places where they don’t have the FDA (U.S. Food and Drug Administration) to hold back research,” she said. “I found this place in China that does umbilical stem-cell transplants.”
‘I wanted to know everything’
She sent a brief description of her daughter’s condition to the research program in China.