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The Jerusalem Netletter: Hanukkah 5772, December 2011

By Barbara Sofer

First Light Story

SOPHIA'S HANUKKAH GIFT FROM YOU

For Sophia Sivaks, light hurts. When we meet on a winter day before Hanukkah in Jerusalem she's wearing dark glasses, hanging on to the arm of Ruthie Ezra, her housemother at the Meir Shfeya Youth Village. Sophia, a slim blonde wearing black jeans and a tailored jacket, is one of 70 high school students from the former Soviet Union who are taking part in the Jewish Agency's Na'eleh 16 program for study in Israel. These teens come by themselves for two years and complete high school in Israel. Sophia grew up in Vladivostok, a Russian port city about the size of Jerusalem. Sophia is in Jerusalem because she has an appointment at Hadassah's Michaelson Institute for Rehabilitation of Vision, named for Hadassah's renowned Scottish-educated ophthalmologist who moved to Israel in 1948 after serving in the British army in Egypt in World War II. The staff members and teachers at Meir Shfeya youth village noticed Sophia's nearsightedness as soon as she arrived at the beginning of the school year. She needed to sit close to the blackboard and held her schoolbooks close to her nose. Still, she could read and write and had friends. Then one day, sitting around a table schmoozing with classmates, Sophia was asked to pass a pitcher of juice. Instead, she grabbed the tablecloth. Everything came crashing down. "I realized she couldn't see the tablecloth,"

said Ezra. "She was devastated and inconsolable. To us it was no big deal: kids spill things. At first, I couldn't understand the extent of her distress. Only later did I realize how important her faC'ade of leading a normal life is." An ophthalmologist in nearby Zichron Yaakov said Sophia's retina was atrophied and there was nothing to do. She recommended that Sophia get assistance living with her disability at Michaelson Institute, which specializes in patients with low vision. So here she is Sophia, Ezra and Meir Shfeya village nurse Haya Feder enter the building. Even inside Sophia squints when she takes off her glasses. She offers a shy hello without making eye contact. Her eyes drift inward and outward, a condition called nystagmus. The children and adults who seek help at the Michaelson Center are covered by national medical insurance. As a student from abroad, Sophia is not eligible. A fund established by Hadassah-Israel volunteers will pay for her appointment. Sophia is welcomed by a team of three optometrists, all graduates of The Dr. Jack A. and Seena P. Elfant Department of Optometry at Hadassah College. Jack Elfant took part in the WIN/SPIN Hadassah Volunteer Program in Netanya when he got interested in the College Program.

Two of the three optometrists have earned masters degrees in Israel's only graduate program in vision, also at Hadassah College. "We don't diagnose the problem but come up with practical solutions," explains Venornica Tzur, a sabra from Mivasseret Zion. Sophia speaks very little Hebrew and English. Fortunately, Yehudita Gurelik, another of the optometrists, speaks Russian. She moved to Israel 18 years ago from Lithuania. A battery of tests which reveal that Sophia is colorblind and nearsighted enough to be considered legally blind in the US. The optometrists provide a variety of corrective tools to help her see. There are electronic reading devices, magnifiers, telescopic reading eyewear, and a handheld telescope that looks like a camera. Some of the eyewear looks as if it came from outer space, but other choices are less conspicuous and more appealing to a pretty teenager.

Next, Dr. Tatiana Floresco-Sebok examines Sophia.

Everyone in Israel is a story.

A word about Dr. Sebok. She made Aliyah after completing medical school in Romania. She is doing, her residency in Ophthalmology at Hadassah. After she arrived here, she met and married Daniel Sebok, another Hadassah physician who had come to Israel from Romania for additional training in orthopedics. They have a baby daughter Sara.

Sophia has achromatopsia, a disease of the retina which is responsible for the color blindness, the nystagmus, the short-sightedness and the light sensitivity. After a meeting with the social worker, Sophia is referred for more sophisticated examination of her eyes at Hadassah Hospital. The Michaelson team also recommends she be fitted for innovative contact lenses which will change her life. Israel's expert (and possibly the world expert) is another Hadassah College graduate: Boris Severinsky. He and Dr. Sebok will be presenting this breakthrough at a medical conference in the spring. They have 11 successful cases so far. Sophia can make up the dozen. Of course, there is a cost for these special lenses. Hadassah Vice President and Youth Aliyah Chair Benita Ross is in Israel. She meets Sophia and immediately offers to pay for her lenses. A few days later, we are in Hadassah Hospital's eye clinic in Ein Kerem for an electoretinogram and OCT eye imagery. She will also have a blood test. The first series of tests is conducted by Shira Tanimi, a very religious woman from Kfar Saba. Yes, she's also a Hadassah College graduate. Then, because language is necessary for the next examination, Marina Schulman does the next series of tests.

A word about Marina Schulman: She's 57. She studied medicine in Moscow, but failed to pass the comprehensive Israeli exams to qualify as an MD here. "Our training didn't include the general medical/scientific material in the Israeli curriculum," says Marina. "I was fine on pediatrics, but didn't have the background that Israeli graduates do." She retrained at Hadassah as a highly skilled eye technician in the ophthalmology department.

The results of the examination will be sent to Professor Eyal Banim, Director of Hadassah Center for Retinal and Macular Degeneration. He will determine which type of achromatopsia she has. A Hadassah team is currently working on gene therapy for one genetic type of the disease. In addition, the geneticists will be able to advise her about how she can avoid passing on this disease "We're hoping to find not just solutions, but cures," said Department Head Professor Yaacov Peer. With growing anticipation, we finally visit Boris Severinsky's office in downtown Jerusalem. Once again, Sophia undergoes a long series of examinations.

A word about Boris Severinsky. He's 39. Born in Kharkov, Ukraine, he made Aliyah with his parents at age 18. After serving in the medical corps of the IDF he wanted to become a doctor. But one day he saw a billboard advertising the optometry program at Hadassah College. "I wasn't sure what was involved in optometry, but soon discovered that it included patient care and technology." The rest is history. He completed both his undergraduate degree and his MA at Hadassah College, works at Hadassah Hospital, and opened a private practice. The office is busy: Severinsky has developed a specialty also in fitting lenses for patients with keratoconus, a degenerative disease of the cornea. He is married to Svetlana, a fellow-immigrant who works for the JDC's Moldova department.

Severinsky came up with the idea of a red-centered soft lens while discussing the problems of patients who are photophobic like Sophia with Dr. Claudia Yahalom, director of the Michaelson Institute. "Others seem to have thought of same idea around the same time," says Severinsky. At least one American center is offering them. Severinsky worked with the Israeli lens manufacturer SoFlex, which has cooperated with him on clinical research with him in the past. Hadassah College optometry students frequently receive research supervision from the SoFlex, located near Carmiel in the North.

The lenses have a small red circle in the center which covers the pupil of the eye. They reduce the amount of light that enters the eye and allow primarily red light to enter. In addition, the lens prescription improves vision.

At last, Severinsky slips red-center lenses on Sophia's eyes and sends us outdoors to try them in the sunshine,

It's late afternoon in downtown Jerusalem In a new pedestrian mall right angle to King George Street, a crowd of college students has gathered. They are cheering on a dozen architecture students competing on building towers from a pack of plain white printing paper. The tallest tower wins. For the first time in her life without dark glasses, Sophia wanders among them, free of the fear that someone will notice her squinting eyes.

Her eyes are wide open. Her smile is even wider.

What is the Hanukkah miracle? A group of Jewish activists fought to oust the Syrian-Greek rulers and purify the Temple in Jerusalem. It took 8 days to get pure oil from the Galilee. In the meantime, the single cruse of oil continued to burn. According to Jewish tradition, the Hanukkah rebellion was started by upstart Jewish women. I like to think of them as Hadassah women.

A word about Hadassah: Henrietta Szold started Hadassah after she and her mother Sophie visited pre-State Israel in 1909. Everywhere they went, children had flies in their eyes. Today, Hadassah is still bringing light to the eyes of the world, realizing that miracles don't happen in a vacuum.

Think of Sophia when you say the blessings: the one about lighting the candle of Hanukkah, and the second one-about miracle of past and in our time.

Hanukkah Sameach,

From Audrey Shimron, Barbara Goldstein and me

Barbara Sofer, Israel Director of Public Relations

Date: 12/21/2011 12:00:00 AM

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