Most people suffering from a medical disorder or disease are afforded at least the small comfort of having a name to attach to a condition. It gives you something to research.

  Something to discuss with other people with the same problem. Something to rail at and curse when patience wears thin.

Matt Kent doesn’t have that luxury. A disease is robbing him of his eyesight, but it is so rare even the world’s best doctors have no name for it.

“It is frustrating that there is no name,” Matt said. “The doctors can only say it is extremely rare, and they have never seen it before.”

He may admit to occasional frustration, but it is hard to picture. Matt, a 17-year-old senior at North Oconee High School, is matter-of-fact about his problems. He takes his medical problems so much in stride, staff members at North Oconee say most students don’t even know Matt has a problem.

“A lot of people, probably about 75 percent of the students, don’t even know Matt has any medical issues,” said Dr. Christy Conley, a counselor at NOHS.

If people don’t know Matt has vision problems, it is because he never draws attention to himself or uses his medical problems as an excuse to get out of work, said Amy Perry.

“The beauty of Matt is that he doesn’t see himself as different from anyone else,” said Perry, an assistant principal at NOHS. “He has faced difficult challenges but he has never let anything stop him from achieving all he can be.”

To say Matt is an overachiever is a bit of an understatement. He has taken seven Advanced Placement classes at North Oconee, something even the most fearless student might think twice about undertaking. He attended the Governor’s Honors program in Valdosta last summer. He works with a USDA geneticist, helping to research and develop a vaccine for a disease common in chickens. He plays alto sax in the Titan band.

A plate full of studies and activities for anyone, Matt undertakes each busy day with

diminished vision. There are little adjustments, like enlarging tests so he can better see the print, but mainly Matt just digs in and tackles whatever needs to be done, even going to school early to take a test he will miss while at a doctor’s appointment.

“Here is a student who has to leave school for chemo appointments, but is still at the top of his class,” said Conley. “He has to go to Emory, so he shows up at seven in the morning to take a test.”

The ride to Emory has become a familiar routine for Matt and his family ever since he first started having eye problems in his freshman year of high school. It began as just a little double vision and a few blind spots. A trip to his local eye doctor revealed Matt had a huge retina bleed.

Referred to a retina specialist at Emory, it was determined it would be too risky to use a laser to treat Matt. Instead, they injected a chemotherapy drug directly into his eye – the eye of a needle-phobic teenager.

Even such a horrendous memory doesn’t faze Matt much. He was awake for the procedure, he said, but joked, “It took a lot of numbing.”

Several years down the road, Matt still constantly travels back and forth to Emory for treatments. Emory doctors have sent photos of and files on Matt to doctors around the world. No one can match a name to his condition.

“All they can tell me is it is a progressive, degenerative retina disease,” Matt explained.

Perhaps worse than not having a name to attach to a condition is the fact no name means no roadmap for the future.

“There is no prognosis, but so far the chemo seems to be working in slowing down the degeneration,” Matt said.

With his condition stabilized for the moment, Matt continues to do the things he enjoys most. A lover of the written word, Matt said he has his own mini-library at home and reads voraciously. But, he has to read more slowly now to prevent eye strain.

He can still see the musical notes for band, and can still drive. However, microscopes, which he needs to use for his genetic research, are now impossible to use.

“I can’t use microscopes anymore,” he said. “The doctors think I can’t see in them because of the reflected surfaces.”

Even when discussing things that no longer work or have to be modified, Matt shows not even a trace of self-pity. Ever practical, he said all he has faced in the last few years makes good fodder for the endless essays now required on college applications.

“A lot of essays ask for something in your life you have had to overcome,” Matt said. “I can talk about something that I have not overcome, but have learned to deal with every day.”

Matt has narrowed his college choices down to either UGA or Duke. Until he leaves for college, he will continue to balance treatments at Emory with a heavy academic load at school.

He will also continue, said his assistant principal, to inspire his fellow students at NOHS.

“Matt doesn’t feel this way, but he is a role model at North Oconee,” Perry said. “Everyone here has fallen in love with him, and everyone admires him.”

Matt said he doesn’t see himself as a role model or even understand why anyone would be slightly interested in his story. In all honesty, it took several months and much pleading to get Matt to talk with a reporter. It is certainly not his style to discuss his medical condition or draw attention to himself.

His assistant principal and counselor both said they were surprised Matt did agree to an interview. Both said they were glad he did.

“People need to hear his story,” Perry said.

“People need to hear about Matt because he is definitely an inspiration,” Conley echoed. “He has overcome so much.”

Mary Anne Carroll is a reporter for The Oconee Leader. She can be reached at 706-310-1104 or by email at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

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