Berkeley High student faces up to reality of vision loss

Jorden Johnson and his mother Keisha Darden. Photo: courtesy family
Jorden Johnson and his mother Keisha Darden. Photo: courtesy family

Sometimes bad things happen to good people, changing the trajectory of their lives with no notice. For Jorden Johnson, a 17-year-old senior at Berkeley High School, this moment came while attending football practice in the summer of 2015.

Johnson says it was like any other day. He was prepping for the first preseason game of his senior year. He had spent most of the summer preparing for that moment, and was eager to show his coach how he had developed as a player since the prior season. He went through his normal routine: stretching, team jumping jacks, and a few other exercises to get warmed up. It was when the team transitioned to position drills that Johnson began to notice something was wrong.

While going for a pass, Johnson watched the ball as it left the quarterback’s hand, soaring through the air and eventually eclipsing the sun. As the ball passed in front of the sun, Johnson recalls seeing a glare and not being able to relocate the ball, which caused  him to drop the pass.

“It was nothing new. I had done this drill a million times,” said Johnson recently. “I had lost the ball in the sun and been blinded by the glare, so I thought nothing of it.”


Johnson says he apologized to the coach for the dropped pass and determined he would make up for his mistake. His turn came around once more, and just as he had done so many times before, he took off for a pass. Again he was blinded by a glare and again he dropped the ball. This time he wasn’t sure the glare was a result of the sun.

“After that second drop I realized something was off,” said Johnson. “The glare began to turn into bright spots. I didn’t know what it was from, but I knew it couldn’t be good.” He was worried but not terrified, and he left practice thinking that some rest would do the trick.

Over the next few weeks, the bright spots began to occur at a more frequent rate. Alarmed by the changes in her son’s vision, Keisha Darden decided to seek medical attention.

“I initially downplayed the situation,” said Darden. “I attributed the spots to dehydration or restlessness, but each day he would complain about the condition worsening, so I knew something was wrong.”

Darden took her son to an optometrist where they ran a series of tests. The tests took a total of five hours and when they were finished, doctors said they they would notify Darden when the results came back. Three weeks went by and neither Darden nor Johnson had heard back from the doctor. Johnson was still experiencing the bright spots and Darden still needed answers. Finally, the phone rang. On the other line was the receptionist saying the optometrist would like to see her and Johnson later that day.


The “worst news ever”

When they arrived to the doctor’s office, Johnson received what he describes as “the worst news ever.” He was diagnosed with Leber Hereditary Optic Neuropathy (LHON). LHON is an inherited form of vision loss whose symptoms include blurred and cloudy vision. Over time, symptoms worsen until, eventually, the person completely loses their eyesight. There are cases where patients regain some vision, but those are rare.

“When the doctor gave us the initial diagnosis I was scared,” said Darden. “But then it all made sense.”

Johnson has a grandmother, uncle and aunt who all suffered from the disease, which explains how it was passed down to him. Once Darden got the diagnosis and found out it was hereditary, it was easy for her to connect the dots.

“We’ve had family members who suffered from this condition in the past,” she said. “Things were different at that time. No-one had a name or a cause for it. I just knew that people I loved were going blind.”

The next few months were a struggle for both Darden and her only son. Johnson went from being a promising athlete with a bright future to wondering if he would ever see again. However, Darden praises her son’s toughness and says that quality has made it easier for her.


“Jorden has been really brave throughout this entire process,” said Darden. “He’s showed how tough he really is and he hasn’t shown any signs of slowing down, or feeling sorry for himself.”

A lot of potential

Berkeley High’s head football coach, Clarence”CJ” Johnson (no relation) can vouch for the young Johnson’s toughness. He says he was both saddened and shocked when he heard of the student’s condition. Johnson, who is entering his second year as head coach of the YellowJackets, had been hopeful that the the former player would be able to help the Jackets’ young team.

“We as a staff really liked his athletic ability, his work ethic, and we saw a lot of potential in him,” said Johnson. “It’s sad for a kid his age to have to experience something like this, and I’m hoping for the best for him and his family.”

Jorden Johnson says he’s tried his best to stay positive through it all, but at times he does miss the game of football. He began his football career in elementary school playing little league football for the Berkeley Cougars, and was hoping to take his talents to the college level.

“I had dreams of playing college football,” he said. “My current condition has put that plan on hold and it hurts.”

Jorden Johnson when he played youth football for the Berkeley Cougars. Photo: courtesy family
Jorden Johnson when he played youth football for the Berkeley Cougars. Photo: courtesy family

Though he admits he has his struggles, Johnson has made it his mission to persevere. As his vision continues to deteriorate, he fights every day for his independence.

“I felt like I was entering adulthood,” said Johnson. “I’m still fighting for that freedom to be self sufficient.”

Johnson says before his diagnosis he was like any other teenager. He enjoyed sports and hanging with friends — neither of which he has been able to do much of lately. As he preps for graduation in June, he’s not sure what is next.

His condition remains the same. His vision has not improved and he describes it as if he’s watching a television with a bad connection — all static. Despite this, he has still denied all offers for assistance. He doesn’t use a walking stick or a guide dog, although he has been encouraged to use both by doctors — a decision his mother is both weary and proud of at the same time.

“He does everything by memory. He gets himself ready for school and then he catches BART and bus without any assistance. I’m both amazed and proud,” she says.

Though there is no cure for LHON currently, the dietary supplement Idebenone is used as a treatment in many cases. The supplement stimulates nerve growth so if a patient’s vision does return, they can regain as much vision as possible. Due to Jordan’s youth and good health, there is a chance his vision will return in two to five years if he consistently takes the pill. But a bottle of pills, that lasts about three weeks, costs $90, so the family have launched a GoFundMe campaign asking for donations to help cover a three-year supply of Idebenone.

They want to do all they can for the chance that Johnson may regain as much as his vision as possible.

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