New year holds new hope for teen
By By MICHELE GERLACH – Publisher
From the outside, Jonathan Taylor's beautiful blue eyes look perfect - kind, crystal clear, happy.
From the inside, his eyes are less than perfect. When he reads a vision chart from the regulation distance, he sees only the top line.
Taylor, who is 16, was diagnosed at age 6 with Stargardt's Disease, best described as juvenile macular degeneration. The condition causes a progressive loss of central vision, and patients often have trouble reading or seeing in dim lighting.
He is a W.S. Neal junior, enrolled in core classes and automotive technology.
He's also a hunter who loves the sport.
He's already bagged one deer this hunting season.
Mrs. Ray began taking her son to doctors when he was 2 in an effort to determine the cause of his vision problems. One specialist told Mrs. Ray her son was just too stubborn to read the eye charts.
While researches have isolated the gene that causes Stargardt's Disease, they have not developed a cure. However, Mrs. Ray recently located a Connecticut doctor who is having some success treating Stargardt's with drops previously approved for use with glaucoma. The doctor has agreed to treat Jonathon, and the family will make their first trip to see him on Jan. 9.
Mrs. Ray, her husband, Steven, and Jonathon will drive the 1,200-mile trip for ECHO therapy, an experimental procedure involving eye drops using the drug echothiophate. The opthamologist, Dr. Gerard M. Nolan, treats the eyes individually, and has patients sleep between treatments.
In an interview published on a macular degeneration support group's web site, Nolan said ECHO was used for 40 years for the treatment of glaucoma, but it has been replaced by better drugs for that purpose. Because it is no longer commercially available, he said, he has obtained a pharmaceutical patent and is now seeking a company to manufacture it.
Dr. Nolan also has filed an application for an FDA “new drug investigation.”
The benefits he's seeing from ECHO might have previously been hidden because he uses a much lower dosage than was previously prescribed for glaucoma, he said. He also prescribes the drops in alternate eyes; and has found that they perform best when administered before a good night's sleep.
Mrs. Ray said the doctor has seen improvements within 12 hours of the first treatment in some patients. She's hopeful that her son will be one of those. Jonathon, however, is trying not to get his hopes up.
Mrs. Ray said the family expects to make 10 trips - one every six weeks – to Connecticut this year.
She's been busy preparing for the trip, raising money with bake sales, raffles - anything that might help.
Jonathon has two sisters, Samantha, 10, and Courtney, 6, who'll join their grandparents in East Brewton with the rest of their family. travels to Connecticut next week.