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Kudos to Vision for Tomorrow

I picked up the following story on my google alerts and wanted to share it with all of you. Not only is it a great example of families doing something proactive to fight misconceptions about albinism, but I also wanted to bring this group to the attention of the HPS community. This foundation has given the HPS Network a grant that will help with some of the behind-the-scenes expenses at conference.

I want to give them a great big thank you! And kudos on a job well done!

Pioneer Press

Vision for Tomorrow
Parents work to erase stigma, ease difficulties of albinism
January 31, 2008
By
J.T. MORAND Staff Writer

It was when David Zucker ran into Susan Ballis' house asking for a snack six years ago, that Susan realized her 3-month-old daughter would be fine.

David was 4 years old at the time and visually impaired due to albinism. Susan's daughter, Tess, had been recently diagnosed with albinism after Susan and her husband, Jon, noticed their little girl's eyes were moving back and forth rhythmically and couldn't focus on anything.

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Leslie Zucker, left, hugs her son David, 10, while Susan Ballis holds her daughter, Tess, 5. Zucker of Highland Park and Ballis of Deerfield founded an organization called Vision for Tomorrow to help children like their own who have albinism. (Joe Shuman/For Pioneer Press)


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Leslie Zucker, left, and her friend, Susan Ballis, are founders of Vision for Tomorrow. Leslie's son, David, 10, enjoys playing guitar, while Susan's daughter, Tess, 5, holds her mom's hand. (Joe Shuman/For Pioneer Press)


"I will never forget the relief I felt upon seeing David run into my house like a typical child," Susan said. "It was at that moment that I knew Tess was going to be OK."

Leslie Zucker, David's mom, and Ballis, are hoping to bring that sense of relief and hope to other parents of children with visual impairments caused by albinism and other diseases, through their nearly two-year-old organization Vision for Tomorrow Foundation (www.visionfortomorrow.org/).

Humans with albinism, often referred to as "albinos," lack melanin, the protein responsible for color of the skin, hair and eyes, or pigmentation. Albinism causes varying degrees of vision problems, including blindness.

"Our mission is to empower people with low vision to have the confidence and ability to achieve their dreams," said Leslie, who lives in Highland Park. "Our goal is three-pronged: Research, education and public awareness for low vision conditions, specifically albinism and aniridia." (Aniridia is a congential disease that can cause vision problems.)

Finding hope for the future didn't come for the Highland Park mother without fear, sadness and, finally, determination.

Leslie recalled that the day after David was born, she sensed something was wrong.
"I noticed that the bottom of his feet and the palms of his hands had a mother of pearl sheen, and his eyelashes were almost iridescent," she said. "In my heart, I knew something wasn't right. He was pale, didn't seem to track objects visually. He had digestive issues."

Almost five years later, Susan, who lives in Deerfield, had a similar experience shortly after Tess was born. She kept moving her eyes constantly, Susan recalled.
Both their pediatricians said their children were normal. But later, pediatric opthamologists, made the diagnosis.

The doctor performed an eye exam, turend to Susan and Jon and said, "Your daughter has albinism. She is otherwise a normal child. Take her home and treat her like a normal child."

The diagnosis brought a mix of emotions, Susan recalled: "Relief at finally having a diagnosis, which, in the world of visual impairments is one of the best; sadness that this was something real and permanent; grief for the things that Tess would not be able to do; frustration that I could not make this better; fear about the uncertainty; and the overwhelming urge to pick up my precious little baby and protect her from the world."

Although the diagnosis for each child was better than what the mothers had been imagining (a tumor, in one instance), there were challenges to be met.

Perceptions

One was how their children would be perceived.
"Most people are familiar with the word 'albino,' but in a sensational connotation of an evil, white-haired, red-eyed person with supernatural powers," Leslie said. "This is, unfortunately, the image that has been portrayed in the film industry for far too many years."

Leslie's and Susan's albino children are like many other children, except for their complexion and vision.

Both children have several friends. David, now 10, enjoys playing the electric guitar and soccer. Tess, 5, loves mermaids, unicorns and the show, High School Musical.
But as they grow, their vision issues could create some difficulties.

The Zuckers are uncertain whether David's vision will be good enough to allow him to drive.

"David recently asked me how can he ever be a responsible parent if his child has an emergency and he can't drive them to the hospital," Leslie said. "These are the reality check moments that as a parent hit you in the stomach and call for honesty and sensitivity. I responded by saying that 911 is the option for everyone whenever there is an emergency and that driving is by no means a sign of good parenting."
Tess's motor skills have not developed at the same rate as her peers due to her eyesight.

"Albinism causes poor depth perception and difficulty with balance secondary to misrouting of the connections from the eye to the brain," Susan said.

"Tess has been receiving occupational therapy and physical therapy since 3 months of age. However, she is still delayed. She still has difficulty jumping off of things, cannot ride a bike and is slow on the playground. This affects both her safety and her socialization."

Tess can't identify faces or facial expressions, which means she recognizes people by their voices. She doesn't respond to questions unless the person asking says her name.

"Therefore," Susan said, "people think that she is ignoring them or just not interested when she does not answer their questions."

Both children must also wear sunscreen when they go outdoors since they have an increased risk of developing skin cancer.

Self-sufficiency

David and Tess are protected under the wings of their parents now, but Leslie and Susan want them to become as self-sufficient as possible. The mission of the Vision for Tomorrow Foundation is help provide children with vision impairments and their families with the resources to make that happen.

"Eighty percent of learning occurs through observation and vision," Leslie said. "Over 80 percent of visually impaired and blind persons are unemployed. With these statistics, and the fact that our children are visually impaired, we had to do something to change the outcome for their future and others."

The organization has worked closely with Hadley School for the Blind and Chicago Lighthouse. Last year, Vision for Tomorrow gave Hadley $45,000 toward the development of a course on low vision, which can be counted toward an associate degree program for those who work with visually impaired children.

"The goal of our foundation is to help all visually impaired people grow into confident adults with the ability to achieve their dreams," Susan said. "We hope by increasing education, public awareness and funding for research in this area we can help to better the lives of all affected by low vision."

For more information, visit www.visionfortomorrow.org/albinism/.

Comments

Susan said…
Thanks for sharing this, Heather!! I went to the site and am going to join. It is so nice to connect with others. Thanks again,
Susan

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