Seton Hall University sophomore Joseph Schwani hasn’t let Leber’s hereditary optic neuropathy, which began to steal his sight when he was just 16, stop him from living a fulfilling life while helping others through the nonprofit Dreamscape Foundation, an organization he founded in 2013 to help others reach their dreams, despite the obstacles they may be facing.
SOUTH ORANGE, NJ — Joseph Sehwani was a typical 16-year-old just trying to get through Spanish class when his life changed forever. On rubbing his eye, his vision blurred and spotted, until it appeared as if the notes on the whiteboard in front of him disappeared. Shaken, he excused himself and called his parents; as frightened as he was, he had an idea what was happening to him.
After visiting at least five doctors, Sehwani had his worst fears confirmed when the specialists at Johns Hopkins University diagnosed him with Leber’s hereditary optic neuropathy, a rare and incurable disease that causes the optic nerve to atrophy, resulting in a sudden and rapid loss of central vision. He was all too familiar with the condition, as his grandmother and uncle were afflicted by it. But, being told he would soon be blind while he was still in high school was devastating.
“They told me that I had about three to six months left with my eyesight,” Sehwani told the News-Record in a phone interview on Thursday, Jan. 8. “I had the reassurance that I would not go completely blind, but I knew my life would not be the same.”
In the succeeding months, Sehwani said he would notice his vision growing progressively worse each morning as he looked at himself the mirror, until he became legally blind Jan. 3, 2012. And though he lost his eyesight and faced a world of obstacles adjusting to blindness, the teen gained something else — a fierce desire to help people with disabilities like his own. The Dreamscape Foundation was born.
Sehwani, who is now 20 and a business administration student at Seton Hall University, started the nonprofit Dreamscape Foundation in 2013 as a way of raising money through creative fundraisers for anyone struggling with disabilities and for finding a cure for ailments such as cancer, HIV/AIDS and his own LHON. Sehwani said running his own charity has shown people with disabilities that they can accomplish almost anything to which they put their minds.
“There is no chance that someone with a disability has to forgo experiences in life,” Sehwani said. “When I was losing my eyesight, I did meet a lot of people who were also kind of in my situation, not with LHON per se, but they were also losing their eyesight due to other causes. And I just remember them being so sad and so down, and I was, too, but at that point I realized it can either be, this is going to control me or I am going to have to control it. And everybody has the opportunity to take something negative and turn it into a positive.”
Sehwani has brought about a lot of good through the Dreamscape Foundation. Most recently, he raised $2,000 for a 3-year-old girl with cancer by hosting a video game streaming event that even attracted the involvement of several noted video game voice actors. As a result, he said his foundation’s contribution helped cover the cost for her care and she was able to go home for Christmas.
Before that, Sehwani raised $5,410 selling artwork he created using computer programs for the purpose of establishing the Dreamscape Foundation, and he also collected $526 in partnership with Seton Hall’s Boland Hall Council for the American Cancer Society.
Additionally, he said he raised $2,000 and toys during this past holiday season, which went to a number of children’s charities, including Toys for Tots.
Beyond fundraising, Sehwani’s initiative has also garnered major sponsors who greatly aid the foundation’s mission. He said Google for Nonprofits, for instance, provides $10,000 worth of free advertising every month. Amazon Smile also allows interested philanthropists to find and donate to Dreamscape, he said.
While all this may sound like a lot of work for a college sophomore, Sehwani said it is worthwhile if it means helping just one disabled person in need. That is because he himself faced tremendous difficulties in going blind, he said. As he put it, he had to “relearn 16 years of my life” just to carrying out simple tasks such as walking around the house.
But Sehwani also experienced some unexpected backlash at his school.
“Society is black and white, and there is no room for the gray,” Sehwani said. “You are either blind, or you are not. And I was in the gray area. I am not 100 percent blind, but I cannot see, and there was no room for understanding. It was a confused area and I was mistreated because of it.”
Sehwani said he was refused accommodations at school such as extra time for assignments or magnifiers that would have helped him see better. Though a local organization eventually provided him with assistance, he said he still faced isolation from many of his friends, who felt uncomfortable with his disability.
Making matters worse was the fact that LHON is so rare. According to the official LHON community website, only about 4,000 Americans are currently afflicted with the disease, with an average of 100 people diagnosed every year. As a result, Sehwani said there were not many people for him to talk to, especially since he could not find anyone who lost their eyesight while still in high school. By creating the Dreamscape Foundation, he said he wanted to let those with disabilities know they are not alone.
And Sehwani is not alone in his mission. He said many Seton Hall students have expressed interest in and support for the Dreamscape Foundation, adding the university itself has done a lot to raise awareness for his cause.
Seton Hall spokesperson Laurie Pine told the News-Record the university is immensely proud of what Sehwani has accomplished, calling him a defining example of the school’s commitment to service.
“You cannot help but be moved when you learn Joseph’s story,” Pine said in a phone interview on Thursday, Jan. 8. “Joseph’s actions really exemplify Seton Hall’s value of servant leadership. He truly has a call to service, an inspiration to lead through service with integrity, passion and a commitment to helping others and making a difference in the world.
“He will be able to do whatever he wants to,” Pine added. “He has this wonderful quality of resilience and he is very dedicated. I look forward to seeing how he progresses throughout his time at the university and beyond.”
For now, Sehwani said he plans to continue working toward his major in business administration, forwhich he is on an entrepreneurship track, and his minor in computer science.
After graduating, he said he plans to continue expanding the Dreamscape Foundation, though he would also like to pursue other opportunities and develop additional skills for the benefit of the foundation.
Above all, Sehwani said he wants people to remember that their disabilities do not define them. After all, LHON certainly did not defeat him.
“I lost my sight, but not my vision,” Sehwani said.