Charlie Bethay

Charlie+Bethay

Hannah Taylor, Head Copy Editor

On July 24th, 2018, freshman Charlie Bethay celebrated his 14th birthday while an unknown number lit up his parent’s phone. When they accepted the call, the other end spoke of a clinical trial Bethay was being considered for. A clinical trial which focused on treatment for people with Leber’s Congenital Amaurosis — a rare genetic disease causing severe vision loss at a young age.

He was born completely blind with the rare disease. Bethay and his family were told by doctor after doctor there were no treatments or trials to help with his form of Leber’s, CEP290. On most visits, his family was told to wait 20 years. 

Growing up, Bethay could see partial light and shapes, and his right eye was stronger than the left.  But he still missed out on sights the other kids got to see, like reading print books.

But the call he got on his birthday changed his life. For months, Bethay waited to see if he qualified for the trial. He was in. 

The first time Bethay and his grandmother boarded the 45 minute connecting flight from Kansas City to St. Louis, and the two hour flight from St. Louis to Philadelphia, they weren’t expecting much to change. It was only the first stage of the trial and they wanted to be realistic. 

“I hoped it worked,” Bethay said. “There’s no guarantees, but it was cool because I was helping science. The testing is worth it.”

After arriving at the Scheie Eye Institute at the University of Pennsylvania, Bethay started tests to ensure his eligibility. He was greeted by doctor Samuel Jacobsen who was in charge of the procedure.

For 12 hours, Bethay took pictures, performed vision field tests and had his eyes dilated until it was time for Jacobsen to tell him how he would receive the treatment. One shot in the left eye.

“It’s an experiment,” Bethay said. “They’re doing things differently with the me than they have with every other patient. I’m in a different branch of the trial, and I’m the only one in this other branch. Nobody knows what’s going to happen with me.”

The benchmark for subjects in the trial was 20/80 vision, and Bethay’s eyesight was exactly that. People with 20/20 vision stood 80 feet away to see something, while Bethay had to stand 20 feet to get a glimpse. 

One month after the eligibility tests, Bethay returned to the hospital to begin treatment. 

“This big scary doctor comes in with this needle and is like ‘shot time,’” Bethay said. “I knew that was going to happen. The needle goes in, and gets pulled out.”

He knew it was going to hurt, but Bethay wanted the chance to be able to see. He waited almost his whole life for something like this trial to come along, and he wasn’t going to let pain get in the way. 

Almost two years since Bethay’s first visit, he went back once a month to get the same shot in the left eye, and eventually, in his right eye. At first there wasn’t a change. 

But when he was holding his phone in English class, now freshman Bethay looked at his screen with his left eye. The text was different, it was clearer than he remembered. He could see it. 

Bethay’s parents also noticed differences in his sight, with comments he made about seeing how many leaves were on the trees. The moments of clarity gave his parents hope.  

“Charlie would say, ‘I didn’t know all the lockers had locks on them,’” his father Walter Bethay said. “He was focusing on these little bitty things he had never seen before. That’s where our excitement came from.”

The trial gave Bethay the ability to take in the world, to see everything it had to offer. He never expected his eyesight to change or improve, but for the first time, he experienced something most took for granted.

“I got to see the leaves changing colors for the first time, I got to see water falling, I saw snow, I saw lightning,” Bethay said. “All these things I had never seen before.”

After many two hour flights, Bethay stopped receiving the treatment. Jacobsen and his team had no timeline of how long the effects would last, if they did at all. 

And since it was still in the beginning trials, the results were kept confidential. Bethay didn’t know if there were other successes like him, but he did know he made the most progress. 

“You can’t expect too much, they have no idea what’s going to happen,” Bethay said. “But I get to have all these discoveries and share them.”

With the trial ending, the only thing Bethay hoped for was consistency — that nothing changed, and his eyesight kept improving. His 20/63 vision was better than what he had before, he could finally read “Camino Island” and see the outline of texts to his girlfriend. He finally had the chance to see the world through his own two eyes.