Friday, April 06, 2007

Family deals with child's seizures disorder

During the long stretch of nights when Charlie Weis was afraid to go to sleep for fear that he would never wake up, there came a promise.He would make a difference with his second chance at life.Months later, in the light of day, when the reality of nearly dying during gastric bypass surgery was diluted by heavy doses of normalcy, the promise remained.

Unbroken. Unabashed. Untouched by the fact that fear was no longer leveraging humility.Eventually the promise became a dream and then a movement. Today the miracle isn't that the Notre Dame head football coach co-created the Hannah & Friends charity with wife Maura four years ago, it's that somehow the cause never got stale, the momentum never arrested. In fact, it rolls on with more money, more reach, more ambition than ever before.Hannah & Friends, inspired by the Weises' almost 12-year-old special-needs daughter, Hannah, is a nonprofit foundation dedicated to providing a better quality of life for children and adults with special needs.

The mission is that simple, though the challenges and solutions aren't always.On April 17, Charlie Weis will talk about his experiences, serving as the keynote speaker at the 18th annual Human Rights Awareness Day luncheon. The event, sponsored by the South Bend Human Rights Commission, will be held at Century Center.Maura Weis will be honored at the luncheon for her work with Hannah & Friends. A free Fair Housing Workshop will be held at Century Center as part of the day's festivities, before the luncheon."I have put a lot of myself into my coaching over the years, and I think of myself as a dedicated family man, too," Charlie Weis said.

"But there was always something missing. And that was giving back and making a difference. Hannah & Friends completes me." The long-term plan of Hannah & Friends is a 30-acre farm to be built in the Michiana area, with 16 group homes to house adults with special needs."Everybody talks about the explosion of autism and the explosion of global developmental delays," Maura Weis said, "but I don't think a lot of people are thinking about 'Hey, where's this population going to go when they're 21 years old?'"What if the cure for autism is 100 years from now? What if the people who are living with it now -- don't they deserve a life with friends and a place to call their own also?"

I think people are really forgetting that aspect. So, hopefully, we're fulfilling a need, in this area anyway. And, hopefully, because of Charlie's national attention, he can maybe spur other people to build communities like this."The short-term plan focuses on small grants that help families with special needs, with things like respite care and computers and making a family bathroom handicap-accessible. Yet in every moment of every day, it's about awareness.

"I think the problem for people with special needs of all ages often comes from not being treated like people," Charlie Weis said. "They're treated like they're freaks, like it's a freak show. And regardless of disability, whether it be mental or physical, anywhere from kids to adults, they all know they're different."One of the things they appreciate the most is when you treat them normal, when you don't treat them like they're a sideshow. Even my daughter, who has severe disabilities and who can say maybe 50 words, four of the words you hear her say are 'I'm sorry' and 'so sad.'"

So very seldom can she express her feelings like that verbally, but 'I'm sorry' and 'so sad' come out. And a lot of times we believe that her 'so sad' is because she knows that she's different."I think that being the head coach at Notre Dame, following up from being the offensive coordinator with the (New England) Patriots, has given me a public forum to bring that awareness and compassion to people with special needs."

And it's a public forum without fanfare. There is one paid employee in the entire Hannah & Friends operation -- Notre Dame graduate Sharon Bui, formerly a fourth-grade teacher at Stanley Clark School in South Bend. The rest are volunteers and the Weis family, which includes 13-year-old son Charlie Jr. The "headquarters" is the family basement."I think one of our successes is being a mom-and-pop operation," Bui said. "We've been able to keep our administrative costs low and keep a focus on our mission."Charlie Weis is the face of the movement. Hannah, a child incorrectly diagnosed in the womb with the fatal polycystic kidney disease, is the inspiration. Maura is the muscle.

Even back when she was in high school, Maura Weis felt compassion for the special-needs kids -- their structured isolation in the classroom, their unstructured isolation in the lunch room.Those memories faded, but the compassion didn't. And it was reawakened almost a decade ago. Hannah's global delays didn't show up until around age 2 1/2. And Maura Weis immediately immersed herself into finding the answers, the causes for the delays. The original diagnosis was autism/pervasive developmental disorder. In the process, Maura Weis still had to keep the household going while her husband was working 90-plus-hour weeks as an NFL assistant football coach.

Many of Maura's friends scattered, treating her daughter as if global delays might be contagious. The same kind of thinking led family members, for the most part, to distance themselves.Suddenly Maura, the woman whose heart bled years ago for the isolated kids in the cafeteria, was isolated herself. Yet she kept pushing forward.When Charlie Weis was the offensive coordinator of the New England Patriots in his last job, Maura used to pass a decrepit building in Providence, R.I., on her drives from the family home in Rhode Island to Gillette Stadium in Foxboro, Mass."It's a creepy, defunct kind of asylum," family friend Brenda Cryan said.

"It's completely abandoned now. I asked Maura one time what the building was, and she told me this is where children like Hannah were put in the '50s and '60s. They didn't live with their families or go to restaurants or walk around in the malls back then."Maura knew it could happen to anybody. She needed to raise awareness. She needed to help more than Hannah." And so this sweet, petite woman started barking at doctors when they shrugged their shoulders. She sought second opinions. She wore out Google, searching.

As it turns out, what the family had suspected for almost a decade as the cause of the global delays -- the measles, mumps and rubella vaccine -- wasn't the cause at all."Hannah, now we've found, has a seizure disorder, and maybe seizures are what caused her all her global delays," Charlie Weis said. "Well then, the issue is, what caused the seizures?"So, I mean, it's a never-ending saga, because each situation is unique. Each person is unique."But the stress on families is universal. And that, in large part, is why Maura Weis is in the process of writing a book. The yet-untitled work is aimed at parents of special-needs children and is due for release in 2008.

"The divorce rate for people with kids with special needs is over 80 percent," Charlie Weis said. "You could see why, because of the extra anxiety in a house when you have a kid with special needs. It's not normal. You make it normal. It's normal for us now. But when you're younger and you're going through this stuff, you're always working to try to find ways to make your kid's life better. You're always doing that. Every day."There isn't a day that goes by that Maura isn't online or reading up on something, whether we're going to another doctor's appointment -- we're always being progressive to try to make Hannah's life as good as it possibly can."And Maura, in turn, makes sure that the answers, makes sure that the hope isn't isolated.

"She could have kept that information (about the seizures) to herself," Bui said, "but she wanted to get it up on our Web site ( right away, so that other parents might see it. And she does things like that every day."We get hundreds of e-mails to our Hannah & Friends account, and they could just sit there. But Maura answers every one. She builds relationships with families. "The answers are all individual, but the message is the same: Thanks for leaving no stone unturned. Thanks for not giving up on your child."


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