By Wally Kennedy
WEBB CITY, Mo. — Rylea Barlett was born blind six years ago today. Her optic nerves did not develop. She was diagnosed when she was a few months old. Doctor after doctor gave her no hope of ever seeing.
On July 4, the girl received the first of five stem-cell transplants. The stem cells were from umbilical cords. The transplants were done in a remote hospital in China.
Her mother, Dawn Barlett, was told not to expect anything for months. One week after the first transplant, her daughter was responding to the glow of a penlight.
“Three weeks ago on Sunday (Aug. 12), she asked me to get the penlight,” Barlett said. “She wanted to show me where the light was. She kept grabbing at it. She could see the high contrast.”
Then it occurred to Barlett that Rylea might be able to distinguish the features of a person’s face.
“I told her I wanted to show her something,” Barlett said. “I held my breath and put my face in front of her face. I pulled away and asked her what she saw.
“She said: ‘I saw my Mommy. Mommy, you are beautiful.”’
For Barlett, the years of continually searching for ways to bring sight to her daughter’s hazel eyes, the raising of thousands of dollars through donations, the trip to the other side of the globe and the unknowns associated with an experimental treatment — at that moment — had all been worth it.
“I started bawling,” Barlett said. “She could identify everyone. She had never seen her brother, her sister or me. She had never been able to see — other than to feel — a person’s face. She could now put a face with a person.
“What we are seeing now, they did not expect for us to have. We’re building nerves.”
Rylea could be the first patient anywhere with optic-nerve hypoplasia to benefit from stem-cell transplants from umbilical cords.
Larry Brothers, her optometrist in Joplin, said: “Her optic nerves did not work. They would not send light back to the brain. People with optic-nerve hypoplasia never develop vision. This is the first case ever — since the Bible — where someone’s sight has been restored.
“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.”
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.
“I knew there was no cure, but at least they were doing research,” Barlett said. “I felt there was the possibility of potential improvement for her. I got a response back from a lady in the United States. She was their contact in this country.
“In her letter, she said they had never treated anyone for this condition, but felt there was a significant chance for improvement. For a week to two weeks, I prayed about it. I am not one for false hope. I did not want anything like that.”
She put together three pages of questions for her contact.
“I went down the list of possible side effects,” she said. “Stem cells can cause tumors. I was concerned about that. But, umbilical-cord stem cells have no antigen markers like embryonic stem cells. Umbilical-cord stem cells, because of that, can help develop brain and nerve cells — gray matter — but not other things. I thought, ‘Maybe they can develop optic-nerve cells.’
“I wanted to know how they did it. Did it involve surgery? I was told she would have intravenous injections and spinal infusions. After weighing the pros and cons, I thought we should try. The only possible side effect was spinal headaches after the procedures. Of course, there was always a possibility of infection.”
Barlett found a telephone number for a man in Sikeston who had a spinal-cord injury and had gone to the same Chinese program for stem-cell treatments.
“I wanted to know everything about it, including where it was done and the environment there,” she said. “Was the country itself safe? I have never left the United States. This man told me he could not walk, that he was paralyzed from the waist down. When he left there, he had sweating in his legs and could move his toes for the first time. He still wasn’t able to walk, but some small things had improved. That was the confirmation I needed.”
On Jan. 1, Barlett created a Web site telling her daughter’s story. The fund raising for the trip to China began. Donation cans were set up in convenience stores. A benefit golf tournament was held. A family member in Chicago organized a union benefit. One man donated 120,000 airline miles for the round-trip tickets.
They flew from Chicago to Shanghai. It was a 15-hour flight.
“We went to Hangzhou, which is a three- to four-hour drive from Shanghai,” Barlett said. “I kept thinking, ‘What are we doing?’ Every billboard was in Chinese. People were working in rice fields. What are we doing here? There was the culture shock part of it, but I was not scared. It seemed that every door we encountered opened.”
They stayed in a hotel that was four blocks from the hospital.
“It was a modern building, but the hospital was very different from what we are used to,” she said. “There was no HIPAA (medical privacy act). Lots of people were in your business. They called Rylea ‘Princess’ because to them, she looked like a Barbie doll. She got hugs and kisses because she stood out with her long, blondish-brown hair. I never felt like these people were put out. They were very willing to help.”
The arrived on July 1.
“Her first stem-cell transplant was done by IV on July 4,” Barlett said. “It was symbolic for us because it was the beginning of her independence.
“They said it would be three to six months before we would see any changes. It takes that much time for stem cells to mature and become connectors. A week later, on July 11, she started responding to light. Before, when you put a penlight to her eyes, her pupils would not contract when light was shined in them.
“When the doctor shined the light in her eyes, she shut her eyes and turned away. The doctor looked at me. We looked at each other. Everyone was completely silent. In broken English, the doctor says, ‘Congratulations.’ I started bawling.”
Rylea had three spinal transplants and another IV transplant before they left the hospital. Each transplant involved 10 million cells. The trip and treatments were financed by nearly $40,000 in donations.
After they returned to the United States on July 30, they met with Brothers so he could assess the girl’s progress.
“We were hoping she would give us some reaction to light,” Barlett said. “She not only saw the light, she saw a chart across the room with a big ‘E’ on it. He determined that she has 20/400 vision.
“I will never forget Dr. Brothers saying: ‘We have never had numbers. Do you realize we have never had numbers?’ He was so excited.”
The plan now is to go back to China in March for another round of stem-cell transplants.
“She will not get 100 percent vision from this, but you continue to build on what you have gained,” Barlett said.
Now that the whirlwind trip to China is over, life is returning to normal for Rylea and her sister, Kyra, 4, and brother, Zack, 12. But the trip has opened a whole new dimension for their mother.
“The parents of children with optic-nerve hypoplasia have seen her Web site and the progress she has made, and we’re getting thousands and thousands of e-mails, comments and phone calls,” Barlett said.
“You want to help every one of them. You want to offer families hope because we know what it is like to not have any hope.”
Rylea’s Web site
If you want to check out Rylea Barlett’s progress, go to her Web site at www.nomoredarkness.com.
By Wally Kennedy
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