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When Toufic and Linda Hajjar married in 1948,very little was known about Usher syndrome, a devastating genetic condition that caused three of their five children to be born profoundly deaf and progressively lose much of their vision. Virtually nothing was happening in the way of Usher syndrome research at the time. The Foundation Fighting Blindness would not come into existence for another 23 years. But as a close-knit and determined family, the Hajjars did everything they could to help their children live happily and successfully.
At first, the Hajjars knew only that their children — Louise,Michael and Marianne — were deaf; vision problems were not pronounced early on. Linda and Toufic sent the children to a school for the deaf, and helped them religiously with speech, lip reading and language development. Linda recalls, “It was a grueling time, but they were very bright. They got good marks inschool and could read lips better than anyone.”  Their eldest child, Louise, had vision challenges early in life, but the family did not know why. As her vision worsened, they took her to see a local ophthalmologist who referred them to a Foundation-funded physician, Dr. Eliot Berson, of the Massachusetts Eye and Ear Infirmary at Harvard Medical School. A world-renowned retinal degenerative disease expert, he ultimately determined that all three children had Usher syndrome.
Susan, one of the two hearingsighted Hajjar children, says that “becoming blind is often a deaf person’s worst fear. Together, deafness and blindness can cause intense isolation and loneliness. That is why communication and meaningful interaction with others is so crucial.” Growing up, Susan played a major role in helping her siblings communicate with the extended family and the hearing-sighted world.
Louise remembers the tough challenges she had in high school. “It was difficult for me. Having hearing and vision loss created problems in school where no teachers, students, or friends used sign language. Even though I was able to still read lips quite well, it was difficult for me to follow the class material.” In her senior year of high school, Louise’s vision became much worse. She had a harder time reading lips and lost friends because of the growing barrier to visual communication.
But the family always remained close with four of the five children working in their retail clothing business, Hajjar’s Big and Tall Men’s Clothing Company, which is in its 48th year of doing business in Boston and surrounding communities. Their son Steven, who does not have Usher syndrome, oversees the Hajjar retail stores and with Louise, Michael and Marianne, works hard to keep the family business running smoothly. “We all contribute to making a living,” says Linda. “To be truthful, I don’t think our business could survive without the whole family’s contribution.”
Susan says that “inspiration and desperation” lead her to change her focus in graduate school from deaf education to creating needed services for deaf-blind people. With others, she founded the Deaf-Blind Contact Center, Inc. in Boston, which has been providing invaluable services with and for deaf-blind people for over 28 years. Along with Myles Gordon, she co-wrote and co-produced the documentary film, “Touching Lives: Portraits of Deaf-Blind People” which premiered at Boston’s, Museum of Fine Arts in January of 2003.
The Hajjars have been strong supporters of the Foundation for more than 25 years. They and their extended family have participated in the Shades of Spring Gala (previously known as the Seeing is Believing Ball) for many years. They also established a charitable gift fund to raise money for Foundation research. The family has a lot of optimism that an emerging treatment will halt or reverse the devastating effects of Usher syndrome. Linda says, “The researchers are doing wonderful work. We have a lot of hope.” Susan adds, “We love that research is going on. We support it, and pray that it will be fruitful.”
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