Josh Bangert was playing basketball this summer when he noticed the vision in his left eye was blurry.
The 15-year-old from Chicago, in the US state of Illinois, thought he just needed glasses. When he went to the doctor a few weeks later, he was told he had a disease that no surgery or medication could treat. He would likely lose his sight by the end of the year. Josh was crushed.
He remembers lying on his bed, crying, before finally going for a bike ride to clear his mind. When he got home, his brothers and sisters stayed with him for the rest of the night, even joking about what meal he wanted to see last.
An outpouring of support
Josh said he began to accept his fate the next day. What came next was an outpouring of support for the West Chicago Community High School student.
One of his mum’s friends suggested Josh make a bucket list of things he wanted to see and set up a GoFundMe to pay for the trips. Within 24 hours, his dad got a message on his phone: they had hit their US$20,000 goal. Less than two weeks later and people had donated almost US$36,000.
Fulfilling the bucket list
With help from the donations, the family took Josh to a baseball game where he met his favourite player, catcher Yadier Molina. Other things on his list: mountains, the ocean, the desert, Niagara Falls, snorkelling, and white-water rafting.
In the past two weeks, Josh’s friends and their families organised a baseball tournament that raised almost US$800. His friends collected US$600 passing around “Jars for Josh” at school.
“It’s not about the money, it’s about the hearts of the people doing it,” said Josh’s father, Keith Bangert.
His wife, Margaret Bangert, began listing a few who have gone the extra mile for Josh: his English teacher saw that Josh wanted to water ski, so she invited the family to her parents’ lake house. His baseball coach is setting up a fundraiser game so Josh can play with his team one more time. One of his friends sold his PlayStation 4 gaming console and donated the money to his friend’s bucket list fund.
“Josh loves his friends,” Margaret said. “And they reciprocate it, which is amazing. They were crying when they found out. They have been hurting with him.”
Preparing for the future
Josh’s parents are planning for the transitions and challenges their son will soon encounter.
The disease – Leber’s hereditary optic neuropathy – is known to progress fairly rapidly, often starting in one eye and moving to the other, according to Timothy J. Kietzman at the Wheaton Eye Clinic, where the diagnosis was made.
“They don’t really know when it could happen to me. It could be like two weeks from now, it could be a month that I wake up and I don’t have vision in my right eye,” said Josh.
For now, Josh said he can still see the world clearly through his right eye. Sometimes he closes it to see what his world will soon look like. Colours are distorted through his left eye, making things like picking out clothes “weird”.
His school is researching equipment Josh will need when his sight completely goes. His counsellor is starting to suggest job opportunities and universities that will accommodate his new condition. Josh often wonders about meeting new people when he can’t see them. He also worries about not being able to play sports the same way.
His father, who has coached his kids’ teams for the past 20 years, is researching basketball and baseball leagues for those who are blind. His mother found a Facebook group for people affected by the disease. As she watched a video about the world champion in blind golfing, the golfer’s mother called her and offered words of encouragement.
Josh’s friend gave him a journal. He plans to write about his daily life and the messages in church while he can still read the pages.
Margaret wants to print the scores of notes from the GoFundMe campaign and add them to the letters of support Josh has received. She hopes to read the messages to
her son, once his sight goes.
Everything for a reason
Long shadows danced across the lawn as Keith, Josh, and a few of his brothers and sisters played basketball in front of the house. Half a dozen cars were parked out front and a cat ran through the front garden, between girls playing catch. A typical night at the Bangert home.
The tight-knit family of 17, including in-laws, grandchildren, and fiancés, is flying to San Francisco on the American west coast, so Josh can cross the mountains and see the ocean. Whatever money is left after Josh goes through his list will be spent on medical expenses and research, Margaret said.
“This is bigger than just our son Josh, bigger than his bucket list,” Margaret said. “I don’t know what it’s going to lead to, but Josh said from the start that if he loses his sight, it’s for a good reason. We’re seeing that. We’re confirming that.”