© Keith Bangert/ Doctors told Josh Bangert, 15, -- pictured at a St. Louis Cardinals game -- that he will lose his vision in a few m...
By Cathy Free, The Washington Post
When he first noticed a fuzziness in his left eye, in June, high school student Josh Bangert thought he’d simply become dehydrated from playing too hard on the basketball court.
As weeks went by and the 15-year-old’s vision worsened, his mom took him to an eye doctor, thinking he needed glasses. Instead, she and Josh were stunned last month to hear an alarming diagnosis: He has a rare genetic disorder called Leber’s hereditary optic neuropathy, also known as Leber’s disease.
The doctor somberly told Josh that he would be blind in three to five months.
“I went home and cried on my bed,” said Josh, who lives in West Chicago. “And then I prayed and went outside to ride my bicycle for a while.”
When he got home, he saw his parents and seven siblings hugging and crying. It was too much for him. To make them feel better, he lightened the mood with a joke: “Panda Express would be the last dinner that I’d like to see,” he told them.
When you come from a large family, you don’t always get a say in what you’re having for dinner, but this night, Josh got his pick. As the family ate orange chicken, chow mein noodles and fried rice, Josh decided that going blind was bad enough, and that he didn’t want his family to be distraught about it.
"I realized that the best way to cope with going blind was to be positive,” he said.
He also realized that he had a lot to see in a short period of time – he had never seen the ocean, the desert or a mountain vista. And that’s how his bucket list was born.
Now he’s racing to take in as much as he can, while he can.
Friends and family members have responded, raising more than $41,000 so far through a GoFundMe account to help the high school sophomore see the country before he completely loses his sight.
A couple of weeks ago, he and several friends went to Missouri to watch his favorite baseball team, the St. Louis Cardinals, play in Busch Stadium.
“We all want to be there for him and help him through this,” said Will Wingstedt, 15, who coordinated a whiffle ball tournament to raise $800 for his friend. “I really admire how he’s being so upbeat and not letting what’s going to eventually happen to him ruin his life.”
Since Josh’s diagnosis on Sept. 15, he has spent time on a beach in Northern California with his family and visited the Golden Gate Bridge, marveled at the Sierra Nevada mountains and the soaring granite cliffs of Yosemite National Park. He also took in a Chicago Bulls game. Plans are now underway for trips to the Grand Canyon and Niagara Falls, and he also hopes to see Mount Rushmore and the northern lights, and possibly go white-water rafting and skydiving.
But most of all, Josh said he wants to play basketball for one last season with his high school team, the West Chicago Community High School Wildcats.
"There's nothing I love to do more,” he said. “I've played basketball since I was in the third grade."
As a bonus, his dad, Keith Bangert, will be coaching the team this year.
"They called and said, ‘Hey, we have this idea -- would you like to coach your son in possibly his last year of basketball?’ " said Bangert, 50, who works as a sales representative for a digital transformation company. “How could I say no to that? It’s going to be a fun season.”
Plans are underway to paint bright lines on the gym floor so that Josh can see them, and his friends say they are ready to help guide him to class.
Bangert and his wife, Margaret Bangert, an early childhood coordinator for a community church, have been inspired by their son’s acceptance of his diagnosis.
"He's been our rock,” said Margaret Bangert, 49. “Seeing how Josh has responded has helped all of us to adopt the same attitude."
After her son's first eye exam, when the doctor said he was puzzled that Josh couldn't distinguish color with his left eye, Margaret Bangert suddenly flashed back to an eye disease that had stricken a few of her cousins.
“The doctor sent us to the waiting room and I called my mom and found out that it was called Leber’s disease,” she said. “So right there, I started Googling about it, knowing that’s what the doctor would probably tell us.”
When she gently told Josh about the disease, he burst into tears, hoping it wasn't true. “Can they do surgery to fix it?” he asked his mom.
"Honey, there isn't anything to fix it,” she said softly. “It's just something that happens."
Moments later, the doctor called them back into the exam room to tell them. He sent them to the nearby Wheaton Eye Clinic for confirmation that Josh had Leber’s disease. Both of his parents were there.
They found out Josh has a rare mutation of the disease, and only about 4,000 other people in the country have this specific type of it. The doctor said Josh would lose his vision.
“It was really tough to hear that,” his father said.
Leber’s hereditary optic neuropathy causes the rapid disintegration of the optic nerve, “like a TV cord that’s been chewed on by a mouse,” according to the United Mitochondrial Disease Foundation.
Although Josh still has peripheral vision in his left eye, “I can’t see what’s right in front of me,” he said. Sometime in the next few months, his doctor told him, that blurry vision will spread to his right eye, and by March, he probably will be 90 percent blind.
“Like lots of people, I took my eyesight for granted,” Josh said. “I’m grateful to have a chance to see what I can in the time I have left.”
He won’t learn to drive a car as he was expecting this spring, and he has thought about never seeing his future children.
“I’m going to face it and deal with it the best I can,” he said.
His parents are following his lead with that.
“To us, Josh is still Josh,” Keith Bangert said. “He’s still the family knucklehead and we still plan to treat him the same way.”