Joseph Sehwani Sees Brighter Future With Foundation

 

Joseph Sehwani of Flanders lost his eye-sight more than three years ago, but his vision has never been clearer. The 20-year-old college student at Seton Hall University in South Orange started a non-profit corporation just more than one year ago called The Joseph Sehwani Dreamscape Foundation. Issued its 501c3 status on Dec. 6, 2013, the Dreamscape Foundation operates to aid people faced with rare diseases and disabilities through fundraising, research development for cures, resources, knowledge, and inspiration. After experiencing a rare disease and facing incidents of mistreatment, Sehwani gained real insight in the way in which victims of rare disabilities and diseases are treated. Instead of letting that negative energy bring him down a dark path, Sehwani held his head high and began a journey to help not only himself but lead others toward a brighter future.“I knew how it felt to feel helpless and perplexed by a rare sudden disability and I wanted to do everything in my power to help those individuals guide themselves as their motivation and inspiration,” Sehwani says on his website. “I wanted to encourage others to envision their own path in life despite a disability and to always keep moving forward. The road we must take to achieve success and impact humanity is the very roots of The Joseph Sehwani Dreamscape Foundation, together we will help overcome obstacles and prove equality for those impacted with rare disabilities.”It was on Sept. 21, 2011, when Sehwani’s world started to change.

 How it Happened…

He was a 16-year old junior in Spanish class at Riverview High School in Sarasota, Florida, when he was rubbing his right eye and noticed a blur spot. He called his parents right away, and after visiting several eye doctors was diagnosed with Leber’s Hereditary Optic Neuropathy (LHON) by a specialist at John Hopkin’s University Hospital in Baltimore, MD. LHON is a genetic disorder that can cause the optic nerve to atrophy. Symptoms usually begin as sudden, painless loss of central vision in one eye and then the other eye, resulting in a “severe visual loss in both eyes.” While reading, driving and recognizing faces are impossible, peripheral vision can remain intact allowing the affected individual to independently walk around.One obstacle with those affected by LHON is the lack of support since they tend to not “look blind,” leaving others struggling to understand their situation and realizing how profound their vision loss is, Sehwani explains. Sehwani’s disorder was passed down to him by his maternal grandmother who had LHON for 20 years and his uncle who was diagnosed with the disease when he was 11 years old but lasted only three years with his vision returning when he was 14 years old.Originally, Sehwani was told that his vision loss would last three to six months. Unfortunately, after three years, Sehwani is still legally blind.

Into the Dark…

With great courage, Sehwani has dealt with the disorder with a positive attitude and has now reached out to others through his foundation by trying to provide the support that he did not receive at first.“I felt more lost and confused than I was scared,” Sehwani explains when he started to lose his vision. “I was very upset about it, needed some ground on how I was going to handle it. I felt like I had to plan ahead. I felt this was the last couple of months with my eye sight.”In the beginning, Sehwani says he “had a really hard time in high school getting the help I needed; faculty was very negative,they didn’t want to deal with what was going on.” The principal of the school told him“‘you’re better off not going to school because it’s not going to happen.’”Sehwani had been in an advanced pro-gram in high school at the time, called the IB program, but because of its strict requirements and Sehwani’s sudden disability with his depleting eye sight, he was moved out of that program and placed in the general core program.“I wasn’t able to get extra time on tests,”he says. “I wasn’t able to get an extra 30 minutes to read or to magnify.” Sehwani says he had requested electronic books and extra aid to use during his class but “no one was willing to do it. Everything I asked for,they considered it cheating. It was a very bad position for me to be in at the time.”When it came time for the SAT’s, Sehwani says he missed out since he couldn’t use magnifiers. He ended up taking the test with a scribe over a two-day period. 

 A Vision…

On Jan. 3, 2012, Sehwani considers that date the official day when he lost his sight because “that was that day I lost my driver’s license. From that point on it became a deteriorating process, slow eyesight drop and had to use a cane. He was considered legally blind in Fl., which means if eyesight is 20/80 one is legally blind. Legally blind also is used when a person becomes blind later in life rather than being blind at birth, he explains. Also, he found that the Division Blind Services (DBS) helped only individuals that were almost fully blind. Sehwani says “I was in the center. I could see but couldn’t see fully. There’s black and white; black I’m blind, white I can see, but there’s the gray.” Sehwani was in the gray.“This negativity drove me to make something happen,” says Sehwani. “I really wanted to make a difference in the community where it’s gray. I’ve always wanted to help people, just didn’t know how. When this hit me, I never knew where to start so I started with rare disabilities and diseases. I felt mistreated by it; I was treated unfairly.”He sat down with his parents and “figured out what we needed to do.” With their help, he got verified by the state and filed fora tax-exempt organization. He spent six months planning this out. It was during the summer of his senior year in high school, when Sehwani decided to start his concept of his Dreamscape Foundation.

A Brighter Future..

With his creative ability and passion for art, Sehwani held his first fundraiser –Landscape, with his paintings and drawings. Held from Aug. 2013 to Oct.2013, Sehwani was trading donations for his art and raised $5,000 to begin his foundation. Despite his struggles, Sehwani “pushed through and got to college. “It was tough.” He is currently studying business administration with a minor in computers. “At Seton Hall, they give me everything I need.” Up until now, his eyesight has stabilized, he says. He is “okay” in common areas, but in new areas, requires a cane. The LHON impacted his central vision and his peripheral vision is strained.“If you stare at your palm, that’s gone,” explains Sehwani. “Surrounding is blurred and strained. If you are writing something and looked away, that’s exhausting.”Sehwani uses technology like a lot of magnifiers, closed-circuit television, and voice over software. “My best friend is my computer; I can magnify it,” says Sehwani. To maintain his independence, Sehwani says he gets around college all on his own without an aid. LHON is considered a rare genetic disorder. When Sehwani was looking for a diagnosis, he says “no doctor really knew what was happening. They only read about it. They never experienced it first-hand. That was frustrating.” 

LHON…

LHON impacts about 100 people in the United States and 35,000 people in the world each year. Improvement usually hap-pens within two to three years but does not always happen. There is currently no treatment, no medicine.“There’s not a lot of knowledge on what it is and what the cure is to prevent it,” he says. It is these rare diseases and disabilities that do need extra funding and support to find a cure or provide resources for victims to turn to for help.Through the Dreamscape Foundation, Sehwani’s hopes to make a difference in someone’s life and inspire others to do the same; provide knowledge and resources for individuals to help them live comfortably and succeed, and raise funds and contribute to research and development of cures for rare disabilities and diseases. The foundation provides individuals with scholarships, job aids, education accommodations, health aids and all amenities to help them succeed in life. So far the foundation has helped with LHON, Down Syndrome, HIV AIDS, Cystic Fibrosis, Cancer, multiple sclerosis, muscular-dystrophy, Ebola, Diabetes, Autism and Usher Syndrome. 

Recent happenings…

This past year, the foundation sponsored a Toy Drive from Nov. through Dec. 15, donating toys to various locations such as Mt. Olive Child Center, PEAK, Hackettstown Head Start program, Toys for Tots and MJ Media Toy Drive. The foundation also held a 12-hour Holiday Dream Stream on Dec. 20, which raised more than $2,000 for children and families in orphanages, churches, and more.“There are a lot of people during the holidays that don’t get gifts, that don’t have a family. It was nice to see these kids when I brought them toys and gifts. It made my holiday,” says Sehwani. Funds through the Dream Charity Streams are raised in a variety of ways such as online game playing, special guests, questions and answers and voice actors. Sehwani held a recent charity stream with a GoFundMe page for a three-year-old girl, Emily, diagnosed with stage four neuroblastoma, the most common extracranial solid cancer in childhood, in order to help the family financially. “They needed someone to sponsor the event,” says Sehwani. “I was able to help.” He set up a donation page on Nov. 15, 2014, and the community came through to raise $2,000 to help the family with the financial burden. Sehwani has also relied on Google and Amazon for support with his online fundraising events. When people are shopping online, for example, Amazon will donate a portion of the funds to Dreamscape through its Amazon Smile program. 

Contributors…

Contributions have been from all over, says Sehwani, reaching 12,000 people on Facebook and 10,000 on Twitter. “I had 800 people donating to someone they never met in their life,” he says. “There are a lot of good people who are willing to help.” Sehwani encourages even more people to contribute or volunteer.“Any help is good help to me,” says Sehwani, who “appreciates creative ways.” Visit his website at www.Dreamscapefoundation.com, click on the volunteer link to fill out a form whether through fundraising, a campaign, talent or to share ideas for events. Sehwani is a strong supporter of creativity encouraging “unique and different ways” to raise funds and support whether through artwork, music, video games; community; and showing where he sends his proceeds. “I wanted to be completely transparent,” says Sehwani. “I want to keep a sense of community” and let all contributors know that “their ideas are being incorporated. I wanted to make it the people’s charity.”

Sharing The Dream…

Creating this foundation has not only helped others, but it has given Sehwani the strength to carry on.“I was told ‘don’t go to school,’ but when I created this organization, I made sure to let those people know what I did. They were part of my life.” But, ‘if you’re going to tell me I couldn’t do something, I’m going to prove you wrong. I could’ve been upset about it, but I chose to make a difference out of it.“I didn’t want other people to experience what I felt,” continues Sehwani. Creating the foundation, “it gave me a sense of closure. I was rebellious; I needed to find that common ground. If my eyesight did get better, it’s okay, but if it didn’t, it’s okay too because it helped a lot of people in the process.”