Seventeen months ago, Philip and Liz Habecker brought a baby girl into the world, Eleanor Joy Habecker.
Elanor was the couple’s first child, and there were no complications during the birth. After a couple weeks however, Liz noticed something was a little off with Eleanor’s eyesight.
“We didn’t really worry about it too much at first,” Liz said.
“Her eyes were looking everywhere, like she was curious,” added Philip.
About six weeks after the birth and during a routine checkup, Liz asked the family doctor if he thought there was anything peculiar with her eyesight. Following several conversations and a trip to Riley Children’s Hospital, doctors were able to pinpoint a problem. She was born with Optic Nerve Hypoplasia (ONH), a condition which limits the development of her optic nerve. According to research found by Philip, OMH effects one in 50,000 newborns. ONH is not hereditary.
“We went from doctor to doctor to have blood work and tests done,” Liz said.
The couple, who live on South Eighth Street in Goshen, said that when they finally had a diagnosis, they were relieved to hear it wasn’t something far worse.
“We were happy to know what it was. It could have been something like a brain tumor,” Liz said.
When “Ella” turned a year old, the Habecker’s were told about a procedure in China where umbilical cord (not embryonic) stem cells are used to help children with ONH gain better eyesight.
With the help of a few Web sites, the procedure was explained to the Habeckers and they decided that it was something they wanted to look into. The procedure involves four stem cell fusions — one into the bloodstream and three into the spine. The problem is that these stem cell fusions have not yet gained Food and Drug Administration approval in the United States due to lack of documentation.
“We have been in communication with other families who have gone through this procedure and haven’t heard anything negative,” Philip said.
The procedure is done over the span of three to four weeks and Liz said that Eleanor is a prime candidate since she is so young and has some vision already.
Liz acknowledged that the treatment is not an immediate fix. Progress will be gradual and measured over the course of a year. Currently, it is believed Eleanor can see about a foot in front of her, but the Habecker’s won’t be able to verify just how well Eleanor can see until she is able to talk.
“We aren’t sure if it’s just shapes or colors at this point or what exactly she can see,” Liz said.
Going to China
The couple is scheduled to go to China in August. The trip has to be taken then since Liz is currently pregnant with another child due in November and Philip — a social studies teacher at Concord Junior High School — is not working during the summer.
The treatment, airfare, food and lodging will total approximately $35,000.
“It’s pricey, but completely worth it,” Liz said.
To assist in the funding of the trip and treatment, a pulled pork benefit lunch will be held Saturday from 10 a.m. to 2 p.m. in the parking lot of Dana J’s Deli in the Chicago/Pike Plaza in Goshen. A Web site has also been created, www.eleanorshope.com, so people in the community can get more information on Eleanor and track her progress. There are also links to other families across the country who have undergone this treatment.
While having 20/20 vision is probably not possible, the Habecker’s say that they have set other goals for Eleanor.
“The small goal is for her to be able to look me in the eyes,” Liz said. “If she can’t drive or anything like that, that’s fine. But it would be nice if she were able to look me in the eyes.”
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