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Donor Stories: Giving Back Amid Her Own Struggle
Mom Gains Financial Security, But Still Feels Daily Pain of Autism

By S. Jhoanna Robledo
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Nothing ever came easily for Margie Cohan Barres. So even though she'd bought a handful of Lottery tickets from her grocery store just weeks before Christmas last year, she was in no hurry to check her numbers. “It was just like any other day,” she recalls. Winning happened to other people, lucky people, and life, thus far, had been far from lucky.

A good friend was very sick. Money was tight. And her only son, a then six-year-old Brandon, had been diagnosed four years previous with autism. Since then, she'd been running endlessly on

Margie Cohan Barres's son Brandon

a track that often felt like it led nowhere: The search for a therapy, a cure — something that would finally help Brandon communicate with the outside world and live a good life.

When Brandon was just 15 months old, Barres, now 48, suspected something was amiss. Checkup after checkup showed he was behind his peers. “He wasn't hitting his regular milestones,” she remembers. She'd call Brandon by name and he wouldn't respond. He barely spoke. She thought something was wrong with his hearing.

Still, no one thought he had autism, at least not at first. As Barres later discovered, her experience mirrored those of other parents whose children eventually landed on the spectrum. “It was beyond frustrating,” she says.

Can't Have a Simple Conversation

It took many months to finally get a definitive diagnosis; healthcare providers failed to explain what was wrong, until Barres, a New Yorker, took Brandon to meet Dr. Cecilia McCarton, a developmental disorders expert who runs the McCarton School in Manhattan. And even then, friends and family members were skeptical at best.

As time went on, Brandon's — and by extension, Barres' —challenges mounted. Dr. McCarton had recommended a multi-pronged approach to helping Brandon, but because of money constraints, Barres couldn't put all of her suggestions into action.

Brandon developed symptoms of obsessive-compulsive disorder. Finding food he'd eat willingly proved daunting. Sometimes the only activity he took to was watching videos; and he struggled to relax enough at night to be able to fall asleep. Most heartbreaking of all, he couldn't sit down and have a simple conversation with his mother.

No wonder she didn't even watch the lottery drawing the night of Dec. 5, 2005. She'd heard the winning ticket was bought at the same Glen Cove, Long Island store where she'd gone, but it didn't even enter her mind that she could be in possession of it.

So when she finally shuffled over to the computer the next day, still in her pajamas, to go online and check her numbers against the results, she couldn't believe what she was reading on the computer screen – the New York Lottery had drawn her very own numbers for its King Kong Millions, so named because of the monstrous-sized, $55 million payoff.

“I was shocked. I didn't believe it,” she says. “It was so surreal.” She called up her brother and asked him to rush over, desperate to have someone else confirm what had been, until then, the unthinkable: She was a winner, after all.

Financial Gain Doesn't Relieve Emotion Toll of Autism

It's been said that money doesn't buy happiness, and Barres, who walked off with nearly $30 million in cash will be the first to tell anyone that it's true.

Certainly, winning the jackpot has given her immeasurable freedom from financial pressures: She has paid off her relatives' debts, not to mention her own, much of which she and her husband wracked up while paying for Brandon's treatments out of their own pocket. “We were a regular family,” she says. “We lived check to check.”

She has also since taken lavish vacations, most recently to Europe. She has finally hired a nanny to help her with Brandon. And she has moved into a nicer home in a new neighborhood.

Yet Barres' life is still very difficult. “People felt like I was the luckiest person in the world,” she says, yet “my life is the same day to day.”

The years logged raising a child with autism has taken its toll on her marriage, and she and her husband are now divorcing. (She says they are taking great pains to protect Brandon so he comes out fine through the separation.)

And while she no longer worries about the cost of Brandon's treatments and what will happen to him when she grows older — “He'll be okay when I'm gone, and that's a big relief,” she says — she has to work hard to make sure the combination of support and interventions she and his healthcare team have put together continues to help him make strides.

Each day, she has to face the reality of Brandon's condition. Barres says it's nice to know when Brandon needs something, she can say “yes” to it. “But,” she adds, “I can't fix him. I can't cure him. There's nothing I can do with it [even] with a million dollars.”

Still, she's trying to make a difference. Already she has begun to investigate ways to be more involved with organizations such as Autism Speaks that are working to educate the public about the condition. She'd heard of the organization after reading an article on Co-founders Bob and Suzanne Wright, and within weeks of winning, decided to donate $10,000 to the organization. (She'd also given the same amount to Brandon's school.)

These days, Barres continues to harbor hopes for Brandon, and dreams one day she will get that conversation she's longed for. “I would love to ask him ‘How was school today?' and have him [give me] a big answer.”

But in the meantime, Barres wants to use at least part of her new-found fortune to help all those who share her challenges. “There are a billion things wrong with the world,” she explains, “But autism is my world and it's where I'll give back.”


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