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Updated: 7:15 PM Jun 20, 2008
Goshen couple with visually impaired daughter has China in their sight
We met up with a couple who will soon be flying halfway around the world to seek an experimental optical surgery for their daughter. Seventeen-month-old Ella was born with a condition called optic nerve hypoplasia. Posted: 6:34 PM Jun 20, 2008Reporter: Maureen McFadden Email Address: maureen.mcfadden@wndu.com |
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As parents, most of us go to great lengths to help our children.
But what about flying half way around the world for an experimental treatment?
I met up with a Goshen couple who hopes their young daughter may one day see, and they have China in their sight.
Seventeen-month-old Eleanor Habecker jabbers like any other toddler, happily repeating words for her mom and dad, Phil and Liz.
But unlike other little girls, Ella has her own website -- www.eleanorshope.com.
You see, Ella can't see like most other babies her age.
She was born with a condition called optic nerve hypoplasia.
"Her optic nerve is too small, and so it means that her brain is okay and her eyes are okay, it's just the optic nerve in between," Liz explains. "It's just things aren’t getting through to her."
Ella sees very little, which has delayed her walking and the ability to feed herself.
On how much Ella is currently able to see, Phil says "Maybe about six to eighteen inches in front of her. Shapes, and she has light perception."
Liz adds that they aren’t sure whether or not Ella can even see colors.
That's why the Habeckers will soon be traveling half way around the world for an experimental treatment.
A trip that will take them from Indianapolis to New Jersey to Hong Kong, and then to their final destination: Hangzhou, China.
For a procedure pioneered in China; a procedure the Habeckers have heavily researched.
"They do stem cell infusions from umbilical cord stem cells from healthy, live births. And they do one infusion into the blood to make sure that her body can handle it, and then they do four more into the spine," explains Phil.
Helping Ella develop the nerves already there.
"Every child who has gone there has had improvements, so it's a 100-percent improvement rate so far," says Liz.
Phil is a teacher and wants to share normal times with Ella.
"We're both really big readers, so we'd like her to be able to read print,” he admits. “For a while we weren't even sure whether she would be able to navigate rooms, and for a lot of people that have this disorder, they can't."
"The hardest part is that she can't look at us in the eyes,” Liz says. “That's really hard."
The couple hopes that, one day, Ella will be able to “get around and be just like a normal child.”
To see her daddy when she gives him a kiss, to enjoy the scenery while on a walk, and to see her visitors as she waves goodbye.
The procedure costs 35,000 dollars and isn't covered by insurance.
To help, you can make a donation to any First Source Bank.
There's also a pulled-pork fundraiser at Dana J's Deli from 10:00 a.m. to 2:00 p.m. in Goshen on Saturday, June 28th.
For more on that event, as well as continuing updates on Ella’s progress, visit her website at www.eleanorshope.com.
We promise to update you on Ella's progress.
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