Friday, May 16, 2008

Daegan's fight for sight

May 16, 2008

By Wes Wallace
EAST PRAIRIE, Mo. - It's an experimental treatment from thousands of miles away, and it could be the only hope for a four year old from the Heartland. Daegan Archie was born blind due to a rare disorder, and there's no treatment here in the United States.
"There's no way this can be fixed, he's blind, and he's going to be blind for the rest of his life, " said Paige Archie, Daegan's mother, as she recalled a series of visits to the doctor.
Discouraging news from medical experts, giving no hope, no cure, and no where to turn, for little four-year-old Daegan.
"I didn't give up hope, but you thought in the back of your mind, when is this gonna happen, if ever," Paige questioned.
Her only alternative, new stem cell research that could help correct Daegan's blindness.
Blind from Birth
At three months old, Jason and Paige Archie noticed a problem with Daegan's vision.
"A couple of family members would say something's wrong, he's not tracking light, and wouldn't look at people when they walked by," said Paige.
A visit with the family doctor and even trips to eye specialists in Cape Girardeau couldn't diagnose what was wrong.
"At one point, they never said anything. So I asked 'can he not see', and they said 'he can't see'...I said nothing? They said 'nothing'."
The eye experts determined Daegan was born with a condition called Septo-optic Dysplasia, which means his septum and optic nerves didn't fully develop. It's a rare condition with no treatment in the U.S., forcing the Archie's not take no for an answer
"When somebody tells you something that's not going to happen or good luck, there's a one in a million chance, you don't tell me that, because I'm going to find a way, anything in my power to change," Paige said. "So that's what we're doing."
Fight for Sight
Then Paige did what any mother would do. She researched and read an article about a treatment done only in China using umbilical stem cells to help re-grow the nerves in Daegan's optic nerves. However, Daegan's family faced major medical bills of more than $40,000, plus an expensive trip to China.
"I have to work full time and my husband works full time, we have two kids, so we thought, 'How are we going to find time to do fundraiser's?," said Paige. "But you find time."
Of course the procedure is very experimental, but what's so remarkable, many people in East Prairie, Bertrand, and all across the Heartland opened their hearts and wallets to help with a controversial procedure. After hearing Daegan's story, you can understand why so many want to help his fight for sight.
A Community Cares
"Everyone wants to help...they all want to be part of this miracle that we think will take place, " said Loretta Peters, a relative and major fundraiser for Daegan's Fight for Sight.
We caught up with Peters as she was organizing a fish fry and auction. She tells us she's overwhelmed by the outpouring of support for little Daegan.
"When you look into those big beautiful eyes and you realize they can't see, they've never seen light or his mother's face, how can you not want to help?" asked Peters.
Paige and Jason Archie are fully aware of the community contribution to their cause and are fully grateful.
"I just want my baby to see me, see his family, and see all these people who've been helping him," Paige added. "I want him to be able to look at those people and say 'thank you'."
Stem Cell Controversy
We need to point out, the stem cells used come from umbilical cords, and not from embryos. Even so, there's still a lot of debate about the effectiveness of the procedure.
However, Rylea Bartlett, a six year old from Webb City, Missouri had a very similar problem just like Daegan. She had the procedure done in China recently, and she's now able to see with glasses. Her vision is not perfect, but when she realized she saw her mother's face for the first time, she said, "Mommy, you're beautiful." Later, she looked in the mirror and didn't understand she saw her reflection, so she asked her mother, "Who is that pretty girl?" So far she's one of 13 children who gained vision after the operation. We talked to Rylea's eye doctor, and he calls it a miracle. Dr. Larry Brothers explains he understands there's controversy, but he saw Rylea when she was blind and the fact she can see now is amazing.
Paige, her mother, and Daegan will fly to China later this month for the therapy at the same hospital where Rylea had her treatment. We'll keep you updated on what happens next. You can keep track of the progress from China on Daegan's web site.
WorldNow and KFVS12
Source: kfvs12.com http://www.checkbiotech.org/orphan_News_people.aspx?infoId=3366

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