Sight for Savannah

She can belt out the songs of her favorite country singers and win prizes showing her paint pony, Benny.

But, Savannah Watring has never seen her Aunt Sherla’s red hair. She has not seen her grandmother’s lips silently mouth the words of the songs she sings. Savannah has never enjoyed the lights of the family Christmas tree.

Savannah, 7, of Syracuse, was born blind.

The little girl and her family hope this will be her last dark Christmas. The family believes an experimental treatment in China could give Savannah sight.

Savannah was born with optic nerve hypoplasia, which happens when a child’s optic nerve fails to develop in utero. The condition can cause visual impairments to blindness, hormonal problems and developmental delays.

In Savannah’s case, her loss of sight is the only condition she has associated with ONH.

Cassandra Fink, supervisor of clinical trials at the Vision Center in Children’s Hospital Los Angeles, said optic nerve hypoplasia (ONH) is the leading cause of blindness among children.

The cause of ONH is unknown, but Fink said research has shown that it’s not genetic or hereditary. Some think environmental factors during pregnancy may have something to do with the cause, but “we don’t know how to pinpoint it,” Fink said.

Cases of ONH are undocumented in the United States. The closest figure researchers can find is a Swedish statistic that shows 10.9 children per 100,000 have ONH, or about one in 10,000, Fink said.

Savannah’s family members recall her as a cranky baby. Her eyes would roll around, and noisy places seemed to bother her.

“When she was first born, at about 8 weeks old, we got to noticing that she wasn’t tracking like babies do,” said Savannah’s grandmother, RaVana Watring.

Family members said they thought something was wrong with Savannah’s eyes, but tried to dismiss their concerns. A Columbia ophthalmologist confirmed what the family feared — Savannah was blind.

“I kept thinking it was something that could be fixed,” Mrs. Watring said. “And when they said it couldn’t, and never, I fell apart.”

Savannah was tested to check for other complications associated with ONH, but found her symptoms were isolated to blindness. Her left eye can differentiate between light and dark.

“Basically, they steered us away from the Internet because they said there was a lot of false hope out there,” said Savannah’s aunt, Sherla Hagerman. “If there would be anything that came out in the news, or any sort of media, we would get excited and listen and pay attention to it. But it never pertained to hypoplasia. It was always the retina or the eyeball itself.”

Savannah’s parents, Brent Watring and Susie MacLaren, separated when Savannah was a baby, and Mr. Watring received custody. He is on the road most of the time, buying and selling horses. Mrs. Watring takes care of Savannah, and her parents see her on weekends.

MacLaren said that in the past, she’s tried not to get too excited about possible cures.

“I’m trying to be a little less cautious and a little more hopeful,” she said. “I can’t help but get excited about it.”

Hope for Savannah’s sight came in an unexpected way, Hagerman said.

“We never really gave up hope that there would be something there,” she said. “We just didn’t know when or how it was going to come to us, and never dreamed it was going to be in The Sedalia Democrat, to be honest with you. Something that we take for granted.”

Teresa Hiatt, a paraprofessional at Tipton Elementary School who works with Savannah, saw an article in the Sept. 9 Sedalia Democrat about a Missouri girl with ONH who began seeing after she received stem cell treatments in China. She told the family to read the story. Hagerman’s husband found the article.

“He held the paper up and I said, ‘It’s probably some false hope.’ And he said, ‘No it’s not.’ And I read it, and it’s been crazy for six weeks. We have not stopped for one second,” Hagerman said.

She called Dawn Barlett, mother of Rylea Barlett, 6, who was featured in the article. The families have kept in touch. Rylea could see the large “E” on the eye chart shortly after she returned home from China, and her sight has continued to improve.

“She can distinguish between lip gloss on her mom’s lips and freckles on her grandma’s face,” Hagerman said. “She can actually say, ‘Grandma, you have freckles,’ and she can see them. Her mom says they were actually age spots, but to Rylea they were freckles.”

Barlett referred the family to a Web site to learn more about the procedure. Mrs. Watring, her son, Savannah and MacLaren applied for passports and collected doctor’s records for the trip. The family has to send their information with a letter from China inviting them to the country to receive their visas. A woman in the United States will make the final trip arrangements.

“You don’t just go get a passport and say, ‘I’m going to China.’ There’s a lot of red tape here that you have to go through,” Mrs. Watring said.

The family is expected to stay in China for 30 days while Savannah receives four to five stem cell treatments. The stem cells, taken from umbilical cords, are injected into the spine very similar to a the way a woman in labor receives an epidural. The stem cells are supposed to generate growth of the optic nerves.

“It’s a matter, and I say a matter as a scientific matter of form, that’s going to be thrown in the trash,” Hagerman said of the stem cells.

“That can actually heal something,” said another aunt, Shonna Millsap.

Savannah said she’s excited, and not scared, about having the procedure.

“We’re going to go to the airport. Then we’re going to go to China,” she said. “We’re going to get my eyes fixed, and they’re just going to rub my back.”

The trip and procedure are expected to cost about $50,000. The cost has prompted a fundraising campaign by the family, with more than $20,000 raised through a dance, donation cans dispersed to various businesses, and sales of T-shirts, hooded sweatshirts and bracelets. A benefit dinner, raffle and auction are planned Dec. 9 in Tipton.

“We’ll sell everything we have to get her there, at this point,” Hagerman said.

Savannah’s family has been touched by people’s generosity. A young boy gave $5 at a Dairy Queen after seeing a poster about her.

“That was like $50 to that little boy,” Millsap said.

That’s the nature of the community, Mrs. Watring said.

“This little community, they hang tight when someone’s in need,” she said.

Once all the money is raised, it will be sent to the China hospital, and the family will leave within that month.

“Our expectations are that she can see as well as us, our hopes are that, but we know that she probably will not have sight as clear as mine or yours,” Hagerman said.

Some are skeptical of the procedure. Fink said she first heard about the stem cell procedure last spring and has heard of only three or four children who have undergone it. The risk of the procedure in China is unknown, because “we don’t know the research on it,” she said.

“They’re basically experimenting with these children,” she said. “That’s why we’re not recommending it.”

However, there is no research going on here that is looking for a cure, Fink said. She said research here is focused on learning more about the condition.

Savannah’s family members said they feel comfortable that Savannah will be safe, after researching the procedure and talking with Savannah’s doctors and the hospital in China. The little girl has nothing to lose and everything to gain, her family said.

“It’s hard because we pursued it and found the article, and if I thought I sent her over there and it was a bad thing, I don’t know if I could take it,” Hagerman said. “But, believe you me, I’ve done some research on it and I’ve even asked my family doctor if it was his child would he do it, and he said absolutely. There’s no negativity. The only negativity that we have is because it’s not done here. That’s the only thing.”

MacLaren said she too is more concerned about having the procedure done in another country rather than whether it will work.

The family does worry that Savannah’s personality could change with sight. Savannah “doesn’t know a stranger,” Hagerman said. She often asks people what color their hair is, their mother’s name and how to spell their own name.

Savannah often sings before crowds of as many as 600 people. Her family wonders how she will react when she can see all those people.

“She’s solid; she knows what she believes,” Hagerman said. “I just think she’ll keep that part of it. I think she’ll still be strong. I sure hope she is. And that’s been hard to think she might not be the same person when she comes back as far as personality.”

Savannah said she’d like to see colors, the Barletts and squirrels.

“I don’t want us to be a disappointment to her,” Hagerman said. “I know in her mind we all have a look.”

Hagerman later asked Savannah, “Do you want to see what Aunt Sherla looks like?”

“I think you look like Shania Twain,” Savannah said.