KREBS, OKLAHOMA - Les Roberts woke his father up when he began screaming, "Dad, I can read the Cheez-It box!"
The red and orange box was all the way across the rented hotel room. Before that morning it would have been impossible for the young man to read the largest letters on the box even if it had been right in front of him. To read them from across the room meant there had been a big change in Les' eyesight.
For years Les had been slowly going blind, everything straight ahead of his eyes blurry, sometimes completely black. Colors had faded so much he didn't realize that traffic lights really are "red, yellow and green," his mother, Pam Roberts, said. "He had been living with low vision for so long that he didn't realize it had gotten so bad. He just accepted it" as the way the world actually looked.
But then Les began having a very hard time seeing and the prescription on his contacts was changed and then changed again. It didn't help.
His world was slowly darkening and it looked like infection had set up in his eyes.
That was when Pam Roberts went online to find out what was happening to her son.
She found the answer at www.mdsupport.org. Les had Stargardt's disease, also known as juvenile macular degeneration. It's an extremely rare disease that always affects both eyes.
For a 17-year-old high school senior who wants to design race cars, that news meant changing everything from his career options to who gets to drive and who rides shotgun. But in the end Les didn't have to change anything.
His mother read online about a doctor in Connecticut who was treating Stargardt's with Echothiophate Iodide - medicated drops that have been used for years on patients with glaucoma. The Roberts family decided to go to Connecticut and try the experimental treatment.
"The drops have been used for years on people with glaucoma. Dr. Gerard Nolan discovered that at low doses the retina responds to it, and blood flow to the eye is increased," Pam Roberts said. "You've got to have good blood flow to your eyes because if you don't it makes your brain think it doesn't have to send blood to that area and everything continues to deteriorate."
Using the drops for Stargardt's has not been approved by the Food and Drug Administration yet, Pam Roberts said, which is one reason why they asked the community for financial help in saving Les' sight. Pie suppers, pool tournaments and garage sales helped bring in money. The Solomon Lodge No. 32 of Krebs matched the funds raised at one of the pie suppers and in November the Roberts traveled to Connecticut.
"Before he started the drops Les was legally blind at 20/200," his mother said. "After the second dose of medication he was able to read the 20/30 line. That is nearly perfect."
Now Les uses the drops twice a week. He can see fine now, well enough that his parents are trusting him to drive their 1937 Ford to the prom in a few more months. His vision - color, near, night and distance - is right on par.
Because Stargardt's is so rare Pam Roberts said that anyone who would like more information about her son's eye condition and the treatment the family chose can email her at firstname.lastname@example.org.