It was December 2016, in his junior year, when he first noticed. “I thought, at first, my glasses weren’t working,” says Zane Stull, now age 18.
A couple of months later, on Feb. 14, 2017 — after local medical tests and an MRI at UCLA’s Doheny Eye Center — Dr. Alfredo Sadun delivered the diagnosis: leber hereditary optic neuropathy (LHON), a rare, genetic condition that can strike males during the teenage years.
LHON is an inherited form of vision loss. Blurring and clouding of vision are usually the first symptoms, which may begin in one eye or simultaneously in both eyes. If vision loss starts in one eye, the other eye is usually affected within several weeks or months. Over time, vision in both eyes worsens with a severe loss of sharpness (visual acuity) and color vision — which is needed for detailed tasks such as reading, driving and recognizing faces.
“If I had covered my right eye, I couldn’t read the words,” Stull said.
Stull and his parents, Cecilia and Richard Stull, met with Susie Stone, a Dos Pueblos High School academic counselor, and developed an IEP (individual education plan) to provide maximum flexibility as Stull adjusted to his new world.
“The entire DP staff has been very enthusiastic and supportive, and it’s been ‘a moving target’ because he was still losing vision on a daily basis,” his mom said.
Then, in May 2017, his right eye was affected. Stull’s vision loss wouldn’t stabilize until just before starting his senior year.
His central vision now is blurry in both eyes. He can’t see faces except really up close. In his left eye, he has a small amount of peripheral vision — just enough to tell things are there.
“I am really impressed on how he’s handled it,” said Carrie Buell, a teacher for the visually impaired for the Santa Barbara Unified School District. “He’s lost much of his vision in a year-and-a-half and has had a lot to learn in a very short time — including learning Braille tactilely.”
Never-Give-Up Attitude
“He stays involved in what he loves most — especially his music and moviemaking,” Buell added. “He keeps up in the classroom, and it may take him a little longer and it’s more challenging, but he’s so smart and so determined.”
Dan Garske, an instrumental music teacher at Dos Pueblos, echoed the sentiment: “Zane never gave up on his music, even when he started to encounter problems with his vision. He practiced (tenor sax) by memory, and with a private teacher when he could no longer see the music — and with a very positive demeanor. He is a really nice young man.”
There certainly have been some very trying private moments, as Stull and his family adapt to this new reality — especially last summer, when a new opportunity pushed his boundaries, thanks to his mom’s diligence.
XMO Extreme Mobility Camps “empowers blind and visually impaired youth to reach their full potential through participation in action sports, motivational programs and vocational training.”
Last summer’s camp featured surfing, rock climbing, watercraft driving, wakeboarding and go-kart racing. Stull also attended winter camp in Colorado, for skiing and other sports.
It all builds confidence. Plus, he has met some new friends and inspirational role models.
Stull started his senior year strong. He was named Dos Pueblos October Student of the Month. He and a close friend directed the school’s annual Halloween Haunted House, and then he made his theatrical debut in the school’s fall production of Almost Maine.
“I was an understudy at first, but had the opportunity to move up. It was very fun!” Stull says.
Along with another actor, they developed creative nonvisual cues to help deliver the scenes.
He recently graduated from the Santa Barbara Museum of Natural History’s Quasars program — completing the four-year work-study science internship with four other students, a commitment that required 30 hours of personal time per month and more during summers.
“He likely has over 1,000 hours of community service here alone,” proud dad Richard said.
“It’s remarkable to watch the development of the Quasars students over their years in the program — and Zane Stull is a truly one amazing young man,” said Luke Swetland, CEO of the Santa Barbara Museum of Natural History.
After this summer’s upcoming XMO Camp, he’s off to Northern California in September for full immersion in The Hatlen Center to gain independent living skills.
Then it’s on to Santa Barbara City College, via its nationally acclaimed Promise program.
Potential career plans have shifted from criminal forensics to film and now to music production. Stull has found real joy in bringing people together for music jam sessions. His own musical talents now also include bass guitar and drums.
Stull says that while his vision may be dark, he’s excited about his future.
The fact that he graduated with all of his classmates, has amazingly accomplished his extensive community commitments and is rising to many new challenges is true testimony to his extraordinary character and, of course, the inspirational love and support of his family.
It’s safe to say that Stull is finding his new life’s groove. Watch out world, he’s just getting started.
Zane Stull, In Their Own Words …
“Zane has kept his optimistic spirit even after he lost much of his vision. And he still wants to run and work out! That Zane is one brave dude! — Kevin Young, local youth running coach
“I think we can all learn something valuable through Zane, that it isn’t what life throws you, it’s about how you rise to that life challenge.” — Justin Canty, director of education, Santa Barbara Museum of Natural History
“Zane is a remarkable young man whose vision of art and the world in general has not been hampered by his lack of sight. I had him as my student, and I had the great pleasure of learning so much from him.” — Roger Durling, executive director, Santa Barbara International Film Festival
“I am very impressed that he is handling things as well as he has. It’s pretty phenomenal, actually. Zane is athletic and has been able to pick things up quickly and has a strong desire to be independent.” — Carlo Logan, orientation mobility specialist, Santa Barbara Unified School District
“Zane is a very smart and talented young man, especially with his music compilations on Garage Band!” — Tiffany Kim, rehabilitation specialist, California Department of Rehabilitation
“Zane is a courageous, optimistic and resilient young man who will not let visual loss let him lose sight of his goals.” — Jay Winner M.D., neighbor and running friend
“I got to know Zane last summer at his first XMO Camp — a time when he was still experiencing the transition of losing his sight. Rather than resist what was happening, he embraced it and was always open to new challenges. And I think that’s one of the things that makes him so unique.” — Bradon Schwarz, vice president, XMO Camps
“Zane is a good friend of mine. I love that dude! Absolutely brilliant, creative mind and one of the bravest, strongest guys I know. Him and I have an extremely similar story with how we lost our vision, and I am proud to call him my friend! He just carries a very bright and extraordinary presence with him and lightens anybody’s life who gets the pleasure to encounter him.” — Brett “The Blind Kid” Devloo, @theblindkid
“Zane inspires me every day in the way he handles such a daunting circumstance. He experiences frustration, even anger. He rallies, gets through it, and emerges on the other side brighter and more positive. He has always been an exceptional competitor and a determined artistic creator. Now, through this challenge, he has shown me that he can be unstoppable.” — Richard Stull, Zane’s dad
“Zane has the virtue of finding both a purpose and a passion and remains faithful to what he loves. I am very proud of him.” — Cecilia Stull (aka Cici), Zane’s mom
— WeissCrax columnist Randy Weiss is a longtime Noozhawk contributing writer. In the interest of full journalistic disclosure, he also works for a local financial institution that is a longtime sponsor of the Santa Barbara Athletic Round Table Monday Media Luncheons. Click here to read previous columns. The opinions expressed are his own.