Gail Marino is a tireless advocate for Down syndrome families
The story of longtime Boca resident Gail Marino and the organization she founded, Gold Coast Down Syndrome, began with her own story—one that started in a hospital room in New York after she had delivered a daughter with Down syndrome. Kim Marino was an early baby, and Gail’s husband was away on a business trip. Gail was alone when they told her.
“When Kimberly was born it was devastating. I was very sheltered—everything had been wonderful up to then. I could not understand what happened; I knew nothing about Down syndrome—and then it was called mongolism—it sounded like some weird disease from another country. The first thing I thought was ‘What in the world did I do wrong?’”
People who visited told her she should not keep her child; doctors advised her that the baby should be institutionalized. (“It would be best for the family. It would be better for the child.”) “None of that made any sense to me whatsoever,” she says. “I knew in my heart I would never do that.”
When her husband Gary finally arrived at the hospital, she says it was a moment she will never forget.
“He called the doctor, who told him everything he told me, and he said to the doctor, ‘What do you think? That if our child was born not perfect that we were just going to give that child up? That’s never going to happen. We are going to take this child home, we are going to love this child, and do whatever we can do for this child to make her life better.’ I fell in love with my husband all over again.”
The family moved to Boca Raton in 1979, and by 1980, Gail had begun “her thing,” which later became Gold Coast Down Syndrome, an organization that has been a lifeline for families with Down syndrome children.
She began by learning all she could about the condition, and quickly became an advocate for her daughter, pushing to have her included, with support, in school classes, as opposed to segregated with other myriad kinds of “disabled” children, which was the norm in those days. She read everything the Down Syndrome Congress disseminated, and talked to doctors and lawyers. She learned that every child with Down syndrome was an individual with strengths and weaknesses and specific needs.
Gold Coast Down Syndrome has been providing support, information and programs for families ever since, from initial birth through navigating education to the latest medical findings to available services and therapy.
Kim Marino is 45 now. (Doctors said she would not live past 40.) Gail said some of the things she has learned working with her daughter include speech and communication, inclusivity—making sure her daughter is included in everything—manners, instilling independence and responsibility, and the importance of getting a job, which she still struggles with.
“I took every stage of Kim’s life and worked on how to include her—we try to do that for everybody through the group,” she says. “My goal is long after I am gone that this organization is still running, because it brings tears to my eyes when parents come up to me and say, ‘I don’t know what I would do without this organization.’”
We asked her what keeps her going.
“Gandhi said ‘My life is my message,’” she answered. “I think I’ve had that attitude. My mother taught me that little acts of kindness and serving others is how love is shown. I’ve always done that in everything I’ve done. So I just keep on.”