Concert for Holly

February 16, 2009

By Chantelle Lusebrink

Holly Connor, a 4-year-old who suffers from a rare developmental disease, is as curious as other children her age, despite being born blind. Contributed

Holly Connor, a 4-year-old who suffers from a rare developmental disease, is as curious as other children her age, despite being born blind. Contributed

For many, sight is a given, and most of us will never know what it’s like to wonder things looks like.

But for one local family, sight is a gift and something their 4-year-old daughter doesn’t have.

That could change with your help, said her parents Katie and Dan Connor.

Favorite local Village Theatre actors and musicians, including Dan, will take to the stage in a one-of-a-kind benefit concert, Let the Curtain Rise, for Holly Connor at the theater Feb. 23.

Holly Connor was born Nov. 22, 2004, without complications. But within four months, her parents had a feeling something was very wrong.

“She just wouldn’t look at us,” Katie Connor said. “Whenever we’d call her name or get close to her, she wouldn’t look directly at us.”

After taking her to a pediatric ophthalmologist, doctors told the Connors that Holly was blind.

“I didn’t think it was anything that drastic, but she was blind and that was it,” Katie Connor said. “I cried for a long time.”

Holly underwent an MRI, which showed that during the pregnancy her brain hadn’t developed properly. A lack of hormones during the pregnancy affected her eyes by not creating the proper amount of nerves to form on her optical disk. Holly has both septo optic dysplasia and panhypopituitarism as a result.Children diagnosed with SOD and panhypopituitarism often display a wide range of autism traits. Holly recently tested positively for all autistic traits, Katie Connor said.

But there is hope, she learned last year.

“I was online looking at Facebook when I stumbled across a family who was raising money for their child to undergo a procedure in China,” she said.

The procedure was an uncontroversial umbilical cord-blood stem-cell treatment, conducted by a medical firm in China and Thailand, she said.

“I had no idea there was even a treatment,” she said. “It was just a chance I found them.”

Dan Connor said the couple had wondered what opportunities might come with technology in 10 years, but to have it happen in less than five was something they couldn’t have imagined.

The procedure costs more than $100,000 and is only done in five hospitals, in China and Thailand. The procedure isn’t conducted in the U.S., because the government hasn’t approved it, Katie Connor said. However, each of the children who have undergone the procedure has had at least some of their sight restored, she said.

The procedure would not only help Holly see, but would also help her better deal with her autism as well.

“Basically, this could change her whole life,” Katie Connor said. “She can go from having little to no vision, and having the whole world cut off from her, to seeing depth and color perception.

“Right now, she doesn’t understand that the world exists,” she added. “Basically, it would change her whole life and change our lives as well.”

The family set a goal to raise $75,000 of the procedure costs and only needs to raise $30,300 more — 303 people donating $100 each — to pay for Holly’s travel and procedure in Thailand, Katie Connor said.

The family has already raised $44,000 from mail-in donations, donations to Katie Connor’s blog and other local events, like a concert and auction in Seattle, and a garage and bake sale.

With help from officials at Village Theatre, the family is hosting the benefit and a donor has come forward to match whatever donations are earned from Feb. 14 on, Katie Connor said.

The night’s performances include Dan Connor’s band, Blind Child. The event is free, but the Connors hope community members will donate to help them help their daughter see.

“It’s not every day that you get to give a child the gift of sight,” Dan Connor said.

When the procedure is completed, and if it is successful, Holly would begin seeing a therapist to help her train her eye muscles to work.

“I can’t wait for her to look into my eyes. We’ve never had that growing up,” Dan Connor said. “The majority of infants, they do stare up into space, but they do connect with the person that is holding them. That is probably what I’m most hopeful for.”

The results of the procedure wouldn’t be known for six to nine months but Katie Connor said she believes it will be well worth it.

“She is a really tough kid, but we have a chance to help her understand the world and that is what we’re trying to do,” she said.

On the Web

About Holly

sites.google.com/site/ hollylynnconnor/Home

About the procedure

www.beike.ch/en/Hypoplasia-video

Blind Child

www.rockallday.com

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