Christmas a little brighter for child

By Wally Kennedy

wkennedy@joplinglobe.com

WEBB CITY, Mo. — Rylea Barlett has had Christmas trees in her home before. But this year is different.

Rylea, a totally blind child whose vision was restored by a stem-cell transplant, can do more than feel her tree now. She can see it.

“She never paid any attention to the trees we have had before,” said her mother, Dawn Barlett. “Now, when she comes home from school, she stands in front of the tree for a couple of hours every night.

“She touches the tree, and is fascinated by the lights and ornaments.”

Her tree has been rigged to turn slowly. Different ornaments and sparkling lights pass by her as the tree turns. She touches the ornaments and describes her favorites.

“This one is a ginger-bread man,” Rylea said last week as she stood close to the tree. “This one is a star. This is one with someone’s picture in it. I like this one of the baby in the moon.”

At this stage in her development, she is not unlike an infant who is seeing for the first time. Only things up close can be visualized.

The 6-year-old girl traveled to China in early July where she received five stem-cells transplants in an experimental study. The stem cells were from umbilical cords. It is not clear yet whether Rylea will eventually develop functional vision. But before the stem cells, she had nothing. She can now see light and make out images.

“We still have a long, long way to go,” said her mother. “But every day we see something new. Her mobility has improved a lot. She’s not bumping into things as much as she used to. There’s something new for her every day.”

Seeing her Christmas tree for the first time isn’t the only recent first for her.

“She went to be fitted for glasses,” her mother said. “When the glasses were on her face, she turned and looked in the mirror. She said, ‘Oh! She is so cute.’

“We had to explain to her she was looking in a mirror and that what she saw was a reflection of herself.”

Rylea got to see her first Christmas tree last week thanks to the efforts of two women who believed that a miracle was possible. Even when she was told time and time again that her daughter’s blindness since birth could never be cured, Dawn Barlett never gave up hope. She sought out and found Kirshner Ross-Vaden, a Chicago nurse who had become an expert on stem-cell transplants.

Ross-Vaden is the United States representative for Beike Bio-Technologies, of Shenzen, China. She became an expert on stem cells after her son, Justin, was born.

“My son was born with a severe brain injury,” Ross-Vaden said in a telephone interview last week from Chicago. “He had a massive number of strokes in his brain. He lost 50 percent of his brain mass. Because of this, I started researching stem cells.”

She connected with a non-profit group that was helping families cope with the same issues she was facing. That’s how she met the people from China.

“Justin came here to set me on a path. He knew that I was on the right path and that I needed to pursue the path after he died almost two years ago,” Ross-Vaden said. “His life had great impact and his death had an even greater impact on my life. He is the reason Rylea can see.”

Her son did respond to the stem-cell treatments, but the damage to his brain was too extensive to be corrected.

Ross-Vaden looks at stem cells as science. But, the circumstances associated with her son’s illness and his death, and how that would impact Rylea she views as a miracle.

“Everything merged,” she said. “All of the different components were directly related to him. All of the pieces came together perfectly. When that happens, that’s a miracle. I would not have been so passionately motivated about this had it not been for Justin.”

It was in December of last year when Barlett found an e-mail address for Ross-Vaden, a 42-year-old registered nurse who works out of her home for Beike Bio-Technologies.

“Dawn sent an e-mail in the middle of the night through our Web site, asking if there was any possibility that her daughter could see,” Ross-Vaden said. “I had been looking at various disorders for the last several months, but had not looked at optic-nerve hypoplasia. It caught my attention.”

That was when Ross-Vaden decided to educate herself about the disorder affecting Rylea.

“It took several days going back and forth with Dawn before I could work through the process in my own head and before I decided this was something that would be considered reasonable and viable,” she said.

“I talked more with Dawn to make sure she understood the circumstances — that everyone in the entire world considered it non-treatable,” she said. “They had not even bothered to try and treat it. There was absolutely no scientific evidence to back my theory and that I was simply making an educated decision about whether Rylea should be taken to China for treatment.”

Ross-Vaden thought the procedure might help because of the work she had been doing with brain-injured children since the birth of her son.

“A child with a severe brain injury can have various visual problems, including atrophy of the optic nerve,” she said. “It’s because of the lack of use of their vision. I was helping families to seek alternative treatments and one treatment was stem cells.

“Some of my patients with multiple sclerosis also had optic neuropathy. After treatment with stem cells, they reported motor-function improvement and improved vision. In some cases, some amazing visual changes occurred.”

“It just happened. I happened to notice because I kept hearing them say: ‘By the way, my vision is better.’ No one had made a note of that before. No vision tests were given. These were all off-hand comments.

“When I got the plea from this mother of a 5-year-old girl in Missouri, I started thinking about how her optic nerve got to be the way it is. It was not that different from an MS patient. I thought Rylea’s optic nerve was in a state of atrophy or underdevelopment. It’s not exactly the same, but it’s pretty dang close.”

Ross-Vaden wrote the protocol for Rylea’s treatment.

“I had no idea our products would work for a child such as Rylea,” she said. “It was literally a theory as to how and why our product would work for Rylea. I took that directly to my boss, the CEO of the company and pitched a concept.

“I told him I think we can do this. I asked Dr. Sean Hu, my boss, for permission to treat Rylea and four other children. It would be five slots at a very low fee. He would be taking a loss to treat these case studies.

“It was a risk for the company. They could point at us if we failed. This was not just a financial issue, but a reputation issue for this company. The company has a strong reputation in China, but is new in the rest of the world. This was a huge risk for him to take.”

After Dr. Hu agreed to the treatments, Rylea would be the first child in the case study from the United States.

But it was not until she had a conversation with Larry Brothers, Rylea’s Joplin optometrist, that Dawn Barlett decided she would take Rylea to China.

Said Brothers: “Dawn could not accept that there was no hope at all. I told her to not ever give up hope. She asked me, ‘What if I didn’t go?’ I told her if it was my son, I would do it. She later told me that for her, that moment was the turning point. All I did was provide encouragement to her.”

The key to success for Ross-Vaden was whether Rylea’s optic nerves were in a state of underdevelopment. If they were, she hoped the stem cells would trigger them into action.

“Stem cells secrete certain chemical factors,” she said. “They can trigger a chain reaction in the cells around them. They can literally trigger a chain reaction for reinvigoration. They can activate dormant cells.

“I had to have more than an inkling that this might work because the stakes were too high,” she said. “We approached it very, very cautiously. We told Dawn we might not see anything for six months. Dawn was concerned that Rylea would see China first instead of home. We told her she did not need to worry about that.

“About two weeks after the first transplant and a few days after the second stem-cell transplant, the television was on in Rylea’s room and she got right up close to the television. She pointed to the screen and said: ‘What is that?’

“She kept pointing to the TV screen. What she was seeing was light, but we did not know that at the time. The next day, the doctors were doing their rounds and they did a penlight test for pupillary response. Any response to the light at all would signal a change for Rylea. That next morning, the head pediatrician at our facility did a penlight test. Rylea squinted and turned her head away from the light.

“I think I did a little dance in my living room. I was so excited when I got the e-mail. I had 100 questions and no answers.

“After I finished crying, I asked Dawn if she realized what we had just done. I had to say it out loud to her. This is first time in history anyone has cured blindness.”

Rylea’s story

Rylea Barlett, of Webb City, is thought to be the first totally blind person whose sight has been corrected.

Her story, first published by the Globe in September, was circulated to news agencies worldwide by Kirshner Ross-Vaden, a Chicago nurse who developed the successful treatment protocol for Rylea in China.

Her case study is to be published in a scientific journal this spring. The findings of her local optometrist, Larry Brothers, have been validated by Scott Atkinson, a pediatric ophthalmologist in Springfield.

The plan now is to raise money to send Rylea and her mother back to China in March for another round of stem-cells transplants.

If you want to check out Rylea Barlett’s progress, go to her Web site at www.nomoredarkness.com.

Optional flair

The process uses benign stem cells from umbilical cords. Embryonic stem cells are not used. So far, umbilical-cord stem cells have been approved for 86 disorders.

Said Ross-Vaden: “China has poured billions of dollars into stem-cell research because they acknowledge that is where the future is headed. It’s not in embryonic research. China, at this point in time, is the leader, but they are running head to head with India in stem-cell work.”

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