Storm’s journey to regain his eyesight
It was difficult to adjust and adapt to a life without vision
A LIFE in darkness wasn’t the norm for Toti local, Storm Schwartz (26). A diagnosis of Retinitis Pigmentosa (RP) at age 10 led to the deterioration of his vision and by 18 the young man was completely blind.
Fortunately an American company, Second Sight offers an operation that will allow Storm to regain some of his eye-sight again, albeit at a high cost.
“Schwartz used to come to our youth church with his sister and friends. He was and still is an inspiration to others, a kind boy from an early age who always saw the best in others.
When Storm was diagnosed I remember him squinting his eyes to see, until his vision was completely gone. Then he needed to hold onto someone’s shoulder to be led around,” said youth pastor of Lion’s Gate Church, Peter Buchner.
“It was difficult to adjust and adapt to a life without vision, to use a cane. I had to swallow my pride, ask for help, rely on people constantly, listen hard and find a new form of independence,” explained Storm.
Storm attended Rehoboth Christian School in Illovo, from his early grades he struggled to read and couldn’t understand why. When diagnosed he continued at the school, arriving early every day to familiarise himself with his surroundings, using certain structures as landmarks. Storm then moved to Brown’s School to continue his learning, where he scraped through each grade. Storm finished his schooling through Glenwood-based Open Air School, for learners with physical impairments. By this time he needed a scribe as he was completely blind. He matriculated and passed all his exams by memory alone. Storm has the best type of personality under his circumstances, taking well to constructive criticism and adopting a positive attitude to all life has served him.
“I remember over-hearing a school teacher say ‘he’ll never make matric, he’s not an academic.’ It was then that I decided I could and would prove her wrong – and I did,” said Storm.
The Toti local has thrived in all work he has done. From being a commercial crime company’s switch board operator to making biltong, he proved himself a fast learner and diligent worker. In addition, he achieved the highest results for his level one brail test. Storm aspires to be a motivational speaker and journalist. He has been on numerous journalism and business courses throughout the country, meeting many people along his journey. He enjoys staying active at Virgin Active, attending park walks with his family along the Toti promenade and swimming in Baggies Beach’s tidal pool.
Storm played blind cricket – where a ringing ball is used – and has represented the KZN team in Cape Town where his team placed third overall. He continued through to SA trials.
“We enjoy watching movies. I’ll explain to him what’s visually happening, then he’ll burst out laughing and I wouldn’t have caught onto the joke, so he’ll explain to me what my ears missed,” said grandfather, Alan Symons, previously a pastor at Lion’s Gate Church.
“I have always said that Stormie is ‘differently abled,’ as his inability to see hasn’t stopped him from having incredible insight. He is the most intuitive person I know, the best listener you’ll find. I am so proud of him and I believe I’m going to live to have him see me again, during this lifetime,” said Alan.
We too often take for granted all the beauty around us, which our eyes enable us to see.
“I miss seeing my family, the ocean, expressions on faces, my friends and those I know,” said Storm.
“Words can’t express how grateful I am for the help that has already come in and all the support I feel over this time.”
Storm wrote about his condition and his hope of affording the life-changing surgery, using voice-activated software on his laptop:
“I was born with full vision and at the age of 10, was diagnosed with Retinitis Pigmentosa (RP), by 18 I had lost 100% of my total vision. I have been blind for eight years. After recently having testing done, we found out the reason for my RP is genetic. Extensive tests have been run and due to my strong optic nerve, I am a perfect candidate to have the Argus II Retinal Prosthesis done. Second Sight Medical Products Inc. is giving a second chance to blind people with RP to see again. This developer, manufacturer and marketer of implantable visual prosthetics provides a form of useful vision to blind patients. Unfortunately this procedure is only available overseas and at a great cost to a South African.”
Living in hope, Schwartz explained that the procedure alone would cost $150,000. Which excludes pre and post-op diagnosis, flights, visas, accommodation and assistance. He would need in the region of a staggering R3,75-m to see again.
If anyone is able to assist towards his costs, contact him on 061 855 2010.
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