Bay Area Chapter Featured Volunteer

Elan Zankman, Bright, Fun-Loving, and Determined!

elan_copilotIn most respects, Elan Zankman is a typical nine-year-old kid. He’s a fierce competitor in soccer and basketball, and enjoys a long volley on the tennis court with his father, Eric. He is also a math whiz and a fan of board games. “He’s been practicing basketball very doggedly lately,” says his mother, Pam. “Elan is an intense kid. He likes to win.”

However, as Elan goes about his business being a fourth grader, he does so with 20/200 vision. Elan was diagnosed with a retinal degenerative disease at the age of three after his preschool teachers noticed he was holding books very close to his face to read them.

Eric and Pam are very impressed with Elan’s acceptance of his vision limitations and the challenges they bring. “We acknowledge with our son that he has this vision issue, and he talks about it with us,” says Pam. “Every once in a while a kid will make a comment like ‘What are you blind?’ when he misses a ball, or a well-intentioned stranger will comment that he is holding his head close to a book. He’ll just reply that he has to do that to read.”

elan_big_jump_high_resolutionIt’s no surprise that Elan approaches life with acceptance and determination, because his parents bring that same honesty and energy in dealing with Elan’s eye condition. Eric has taken the lead in learning everything there is to know about retinal degenerative diseases including related research. “The minute Elan was diagnosed,” says Pam, “Eric threw himself into the subject matter. He became an expert on the diseases, and was in contact with researchers from all over the country. Our son couldn’t ask for a better advocate.”

Eric says that he feels a sense of urgency to find answers to his son’s condition, because they don’t know how Elan’s vision loss will progress. “I feel that is a race against time in terms of advancing the research, trying to identify my son’s gene, and moving treatments into clinical trials,” says Eric. “Some people say that research takes a long time, but there has been a lot of progress in the last five years. I have been going to the Foundation’s Day of Science every year since Elan was diagnosed. Five years ago, there were virtually no clinical trials. But now there are several. It really is a promising time. I am very optimistic.”

In addition to being evaluated by Foundation-funded retinal experts like Dr. Jacque Duncan, at the University of California, San Francisco, and Dr. Richard Weleber, at Oregon Health & Science University, Elan has a vision instructor and an orientation and mobility trainer.

While his vision has been stable in recent years, Elan has been learning Braille and is president of the Braille club at his school. “He’s the resident Braille expert,” says Eric. “When his older sister, Talia, was in second grade, she did a report on Louis Braille, and Elan, who was in kindergarten, came into the class to help the students type their names on a Braille typewriter.”

Talia, who will be a bat mitzvah soon, has discussed getting more involved with the Foundation as part of her community service for the milestone occasion. Pam says, “Talia is very supportive. Like a typical older sibling, she teases him regularly, but never about his vision.”

While Eric and Pam will continue to do everything they can to help Elan and face his vision challenges, they are very confident about his ability to find success and happiness, regardless of what happens to his eyesight. Eric says, “I really worried about him a lot when we first got the diagnosis, but I don’t worry about him any more. He’s a fearless kid.”