Weis Uses Celebrity to Assist Others

Nobody touches Charlie Weis’ heart like his 11-year-old daughter, Hannah.

“Some of the things she does make you cry. Then some of the things she does ... you just laugh,” the Notre Dame football coach says.

At times, Weis wants to do both. Hannah has global development delay, a form of mental retardation. She can’t say more than two or three words at a time, dress herself or tell her parents how she is feeling. She doesn’t know what her father does for a living.

Hannah is the inspiration behind Hannah and Friends, the charity Maura and Charlie Weis founded after the coach nearly died of internal bleeding following gastric bypass surgery in June 2002.

“The following spring my family was on vacation in South Carolina and my wife said to me: ‘Wouldn’t it have been a shame if you had died and we never did any good for anyone but ourselves,’ ” Weis said. “It was like the figurative slap in the face.”

The couple wanted to help people with special needs and their parents because they face obstacles that others don’t understand, such as the stress a disability puts on a family and the disdain they get from others.

“We go to the beach, where she goes around to kids her age and says, ‘Hi.’ They look at her like, ‘Get away,’ ” Weis said of Hannah. “I just think, ‘Give me a break, kid.’ Just say hello. You don’t have to play with her all day. Just say hello.”

Adults can be even worse, often just staring, the couple said.

“When people look at them like there’s something wrong with them, it’s really hurtful. It hurts deep down inside your soul,” Maura Weis said.

She hopes Hannah and Friends can raise awareness and make the lives of those with special needs easier.

“Maybe we can give them some hope,” she said.

Hannah started talking at about 18 months, then stopped. Her parents noticed she seemed to be in a fog. She went from being very happy to becoming upset a lot. She didn’t play with her toys, and she stared at the television.

It took dozens of visits to doctors over more than a year to diagnose the problem.

At first they were told she was just slow. Then they discovered she had a hearing problem. Then they were told by a neurologist that Hannah might have some autistic tendencies. When she was about 3, a geneticist told them Hannah had global development delay.

Three years ago, the fifth neurologist to treat Hannah determined she was having hundreds of miniseizures a day that were causing her to melt down at times and experience delays.

“If someone had found them earlier, maybe she wouldn’t have had as much brain damage as she has,” Maura Weis said.

Maura said although she and Charlie talked for a long time about starting a charity, they weren’t prepared to get started until three years ago -- after he nearly died.

“I don’t think early on you’re capable of doing that, because you need to go through a lot of emotions,” she said.

The Weises started by giving $500 grants to families through Hannah’s Helping Hands, using their own money. The grants went to disadvantaged families with children to help with things such as special medication, sensory toys, computers and respite care.

“They do need a break so they can be a better mother, just like a regular normal mother needs a break,” Maura said.

They also came up with a long-term goal of buying 20 or 30 acres to build a farm with four six-bedroom homes. Each home would house four adults with special needs and two caretakers. The plan also called for a recreation center.

They started fundraising with a golf tournament in South Carolina and brought in more than $100,000.

Other donations followed, with the pace picking up after Weis was named coach at Notre Dame in December 2004. One alum wrote him a check for $50,000. Another man offered $50,000 if Weis would have lunch with him the day before a game.

A July charity event in New York netted nearly $350,000 for Hannah and Friends. Weis also hopes to raise money through his autobiography, “No Excuses,” which hit bookstores Tuesday.