“As moral debate sidetracks stem cell research in the U.S., countries in Asia, Europe are moving to stake claims in the promising industry” -Terri Somers - Union Tribune
GOSHEN -- Young Eleanor Habecker mimics the sound whenever someone else coughs or laughs.
She's a happy infant, one who can't seem to sit still and is fascinated by music. "Anything as long as the lyrics are 'Ba ba ba,' even adult music, like Counting Crows," says her father, Philip Habecker.
The 17-month-old looks and sounds healthy. Her vocabulary is growing, she's attempting to walk.
But Eleanor was born with optic nerve hypoplasia (ONH), an eye condition without a known cure that causes blindness.
In mid-August, the Habecker family will travel to China for a new stem cell treatment to try and help their daughter.
Eleanor will receive injections of stem cells from umbilical cords -- not embryos -- to hopefully develop her optic nerves during a three-week stay in Hang-
zhou, China.
The $20,000 medical procedure isn't approved by U.S. Food and Drug Administration.
"That's just not widely accepted in the United States," said Dr. Chantel Castleman, an optometrist at Elkhart's Abbott Eye Clinic.
The experimental treatment is reminiscent of Lasik surgery. People traveled abroad to Europe and Canada for the procedure years before it was readily available in the United States, said Dr. Jeffrey Weaver, director of clinical care at St. Louis-based American Optometric Association.
And for families such as the Habeckers, there just aren't many other options to treat ONH.
No cure is in sight, Weaver said. "There isn't really anything on the horizon that might be helpful," he said.
Liz Habecker hopes the stem cell treatment will help her daughter see well enough to read a book or drive a car someday.
Or accomplish those "little things we do that we don't even think about doing, just like buttering bread," Liz said.
ONH affects one out of every 50,000 babies. The effects can be anything from mild vision loss to blindness or mental abnormalities, such as retardation, Castleman said.
Eleanor is lucky, her parents say. They know she isn't mentally handicapped and doesn't live in a world of complete darkness.
But Eleanor moves her eyes around, like she's searching for something. She can't focus on objects and struggles to see more than several inches in front of her.
"We don't know how much she can see, and we won't know until she can talk," Liz said.
The road to a diagnosis has been a turbulent one, full of ups and downs. At one point, doctors wondered if Eleanor had a brain tumor.
"We were relieved to have finally pinpointed a problem," Liz said after they learned of Eleanor's ONH diagnosis when she was about 3 months old.
Before they leave for the hospital, the Habeckers are raising money for the treatment, which isn't covered by their health insurance. On June 28, the family is hosting a fundraiser in Goshen.
They'll have reason to hurry back from China. School will already have started for Philip, who teaches social studies at Concord Junior High, and Liz is expecting a second child in November.
And as the couple talk about their daughter's future, Eleanor props herself up on her playpen and teeters around with a fierce, little determination.
The infant's ponytail sits on the top of her head tied with a pink bow.
"She's a cuddler," Philip said.
"She's very sweet" Liz added, "just a sweet little girl."
