Oak Park family appeals to community to save daughter's sight
By Sophia Fischer sfischer@theacorn.com

FUNDRAISERS- Jessie Wolinsky, left, who suffers from a disease that affects her eyesight, poses with United States Olympic figure skating champion Nancy Kerrigan and Jessie's mother, Marsha. The Wolinskys of Oak Park are participating in VisionWalk to raise money for eye disease research. Kerrigan is spokesperson for Foundation FIghting Blindness, which is sponsoring the walk-a-thon.

Fred and Marsha Wolinsky are on a mission to save their daughter's sight but they need the community's help.

Jessie, who turns 16 in November, has retinitis pigmentosa (RP), an inherited, incurable eye disease that causes the retina to degenerate resulting in a progressive loss of vision.

The Wolinskys, including son Matthew, are participating in VISIONWALK, a walkathon to raise money for eye disease research to be held at UCLA at 10 a.m. on Sun., Nov. 4. The Wolinskys have formed "Jessie's Sight Savers," a walkathon team with a goal of 100 walkers and $20,000 in donations for eye disease research. So far the family has sent out 700 letters about the event to business associates, family and friends and raised about $6,500.

"We don't stop," Marsha Wolinsky said. "It's a wonderful thing to know you can make a difference. You tell someone your story and they're touched and then you find out they or someone they know has been affected by a disease."

About 100,000 people in the United States are affected by the disease and most are legally blind by the age of 40, according to the Foundation for Fighting Blindness, a Marylandbased nonprofit that supports eye disease research.

"As a parent it's hard when you're dealt cards you don't like and there's not a lot you can do about it," Fred Wolinsky said.

"The Foundation for Fighting Blindness gives you the opportunity to essentially fight back. At least you feel like you're doing something."

Accommodations are made for Jessie in school. It's difficult for her to see writing on chalkboards or on overhead projectors- so Jessie sits in the front of the classroom to better see the board and is given overhead projector notes on paper.

Some days she experiences blackouts or "floaters," rolling colors or big white blotches that interfere with her vision and cause dizziness. Physical education classes have been the biggest challenge because there are times when running or seeing a ball coming at her during a game like volleyball are difficult.

"Teachers have to be in tune with what she's got," Marsha Wolinsky said.

Jessie is uncomfortable about "standing out" at school, but is getting used to it. Although most classmates know about her disease, sometimes comments are made.

"I've been able to block out more of the negative stuff to focus on the positive but comments will get to me sometimes," Jessie said.

She carries a flashlight with her, especially at night if she goes to the movies so she can see when walking in a dark theater. She can't do contact sports but she does take acting classes, attends drama camp and enjoys writing music and poetry.

Jessie was diagnosed with the disease when she was six years old thanks to an alert nurse at her school, Oak Hills Elementary.

During a routine eye test the nurse noticed that Jessie had a difficult time reading the chart and urged the Wolinskys to take their daughter to a doctor. Jessie was told to wear glasses which didn't help.

The following year during the school eye exam the nurse found that Jessie's eyesight was worse than the year before and again contacted the parents. A new doctor picked up on the disease right away, according to Marsha Wolinsky.

Jessie already had the symptoms of night blindness.

"Her eyes don't adjust in the dark. Jessie would always want us to leave a light on at night when she went to bed but a lot of kids say they can't see in the dark and want a light. We didn't know," Marsha Wolinsky said.

"That first year was very tough for me. There is a lot of sadness, disappointment, 'why me,' but you can't dwell on that."

The family faces a number of health issues. Fred Wolinsky has had Type I diabetes since he was 16 years old; Marsha Wolinsky suffers from scoliosis and has had three back surgeries.

"We all know life is far from perfect. We have to help each other, accept others as they are," Marsha Wolinsky said.

This is the first time the walk is being held in Los Angeles. It has been held in other cities successfully. Last summer Jessie attended an annual vision conference in Kansas City sponsored by the Foundation for Fighting Blindness. It was the first time she had met other people who have the same vision issues.

"There's no one at my school with the same problems I have, so it was amazing to go to the conference and hear other people talk about the same things I have," Jessie said.

"I've thought about going blind and I met others at the conference who had and I realize it can happen to me; but if I do, there will be technology to do something about it," Jessie said. "My family, they do a whole lot. It's as big a deal to them as it is to me."

To participate in the walk or to make a donation, please contact Marsha Wolinsky at (818) 469-1976.