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Thursday, Aug. 25, 2016

Fight for sight: Family in hopes of a medical miracle

Sunday, October 28, 2007

Daegan Archie, 4, feels his mother Paige Archie's hair while they play with a musical keyboard.
(First in a two part-series)

EAST PRAIRIE -- Every night before she falls asleep, Paige Archie dreams about the time her son will see her for the first time.

"I wonder what he'll do when he sees me," she said. "The thought goes through my head all the time."

Her son Daegan, 4, was born blind. Eye doctors say his optic nerves didn't fully develop. "They don't know what causes it," Archie said.

Archie said she had a normal pregnancy, although she had some difficulty with labor. Daegan weighed 8 pounds, 13 ounces when he was born and was "just as normal as could be."

But once he was about 3 months old, family members began to notice things they thought were odd. "He wouldn't reach for a rattle, he didn't care for looking at anybody," Archie said. And his eyes would "jump back and forth." It was her grandfather, Richard Sutton, who finally convinced the Archies to take Daegan to the doctor. "I kept watching and he didn't have the movement," Sutton said. "He wouldn't follow you around or anything."

Doctors told the Archies the only way to make Daegan see is to transplant or regenerate nerves -- something they weren't able to do.

But now the Archies have hope. A couple of months ago, Paige Archie saw a newspaper article about a 6-year-old from Webb City who was also born blind. However, the girl had developed 20/400 vision after receiving an umbilical "corded-blood" stem-cell treatment in China.

"I thought 'that's hope for Daegan right there,'" Archie said.

Soon after she saw the article, Archie found a Web site and contact information from the other family and spoke with that girl's mother.

"I was so excited when I got off the phone," Archie said. "It didn't feel real."

They talked to Daegan's doctors, who called him "a perfect candidate" for the injections. The only problem is that the process is expensive -- and it isn't covered by insurance, since it is considered research.

Between the cost of the injections, travel, expenses the family will incur the 30 days they are in China and the therapy Daegan will require once he returns home, the total tab will be about $60,000.

So now, with help from the community, the family is working to raise that money. Archie hopes to leave for China near the beginning of June.

"Everybody's been pulling for this child," said Loretta Peters, Daegan's great-

grandmother. There have been yard sales, T-shirt sales and road blocks, and about $5,800 has been raised in just three weeks. Organizations are planning other events, such as a fish fry, and a golf tournament is in the works for next spring.

Richard and Judy Sutton, Daegan's great-grandparents, said they've been overwhelmed by the response.

"It's a surprise that in that length of time we've been able to raise that much," Judy Sutton said.

Richard Sutton said he has had several friends say they plan to donate when they see just how much is needed. "It would mean the world to me if he could just see enough to just walk around," he said.

People are being proactive with the cause. "We've even had businesses call and say 'bring a jar' for donations," Peters said.

Even Daegan's brother Jase, 3, has a jar -- dubbed his "China Money" -- where he collects coins. "We didn't want him to feel left out," Archie said.

And for those who can't donate, support and prayers are just as appreciated. "You don't have to donate a dollar," Archie said. "We need prayers, too."

She was afraid the town may not be supportive since stem cells can be a sensitive issue. But, Archie said, she hasn't faced any criticism.

She and other family members have made it clear the injections don't deal with aborted fetuses, but umbilical cords -- in fact, Jase's umbilical cord was banked in case it can be used. They also give out the Web site, www.stemcellschina.com, so people can research it themselves.

"We're just looking forward to the day we can send him to China," said his grandmother, June Maxey.

No one knows what the injections will mean for Daegan. "They don't like to give odds," Archie said.

But she's hoping for something, no matter how small. "It might not be perfect, but if he could see my face, that's all that matters," Archie said.

"If this can give him a chance, we need to give him that chance," Peters agreed.

Even so, the family is making plans to help better Daegan's future if the injections don't give enough improvement.

"We're planning to move to St. Louis so he can go to the Missouri School for the Blind," Archie said.

While it will provide Daegan with an education, he'll also learn important life skills. "They'll teach him how to be independent, too," she said.

But family members hope the injections give Daegan enough vision he doesn't have to go there, and perhaps be home schooled instead.

"In the back of our minds, we hope for more, like for him to go to regular school," Maxey said. "We're all really close and we don't want to see him move away."

Donations can be made at any Focus Bank to Daegan's Fund For Sight, or mailed to:

Focus Bank East Prairie Branch

4950 S. Hwy. 105

East Prairie, MO 63845

Attn: Sara

"Daegan's Mission" T-shirts are also available for $20 for adults and $10 for children; and awareness bracelets that say "Hope for Daegan" are also available for $3. These can be purchased by calling Paige Archie at 573-233-4737 or June Maxey at 573-703-5462.

Other fundraisers are also in the planning stages. More information about them can be found at www.daegansfightforsight.com.