MAYETTA, Kan. — For nearly 10 years, Charlie and Maura Weis thought about this day. They would go to South Bend, Ind., drop their daughter Hannah off at her new home, and brace for tears.
For 10 years, they had planned. Maybe, Maura says, it would feel like they were dropping her off at college. One could hope. But in the end, they knew it. This would be different.
“That weekend…,” Maura says. “I was really a basketcase.”
They had planned for this, ever since that day on the beach in South Carolina, when Maura had challenged Charlie with a simple message.
“You could have died,” Maura said, “And we would have never helped anybody but ourselves.”
Just a few months earlier, in 2002, Weis had nearly died after complications from gastric bypass surgery. Meanwhile, his daughter, Hannah, was afflicted with a rare epilepsy syndrome — electrical status epilepticus during slow wave sleep. She was severely developmentally delayed. And on that day in South Carolina, Charlie and Maura began to think about Hannah’s future, what she would do when she no longer could go to school.
“In almost every school district,” says Charlie Weis, “You can stay in school until your 22nd birthday. But there’s nothing after that. If you’re not job-capable, there’s absolutely nothing after that.”
More than 10 years later, the result of that conversation is “Hannah & Friends,” a foundation that raises money and awareness for people with special needs. On June 8, Charlie and Maura took Hannah to the foundation’s facility in South Bend, which houses 12 full-time residents with “different abilities” and hosts day camps and other events for children with special needs.
In the past 10 years, the Weises helped build the facility from the ground up, raising nearly $10 million in the process.
On Friday night, at Hannah & Friends’ annual summer fundraiser at Prairie Band Casino, Maura and Charlie reflected on the past 10 years. Weis and a few hundred of his closest friends, including former Chiefs quarterback Brady Quinn, gathered for a benefit dinner in advance of a golf tournament on Saturday. Comedian Rob Riggle was there. So was Weis’ good friend Mike Golic, an ESPN radio personality.
“I think the biggest thing is just the overall mission that they have,” says Quinn who has attended the event for years. “And just knowing Coach Weis, and the passion that he has to take care of Hannah …and knowing that there’s other families out there that have similar situations.”
In the short-term, Charlie Weis says, the family is transitioning to life with Hannah in South Bend, where her room is painted with her favorite cartoons, just as it was in Florida. As Weis prepares to begin his second season as the football coach at Kansas, Maura will make the move full-time to Lawrence, after having stayed in Florida with Hannah for the past year.
All along, Weis says, the plan was for their daughter to move to the organization’s home base when she turned 18. And Friday was just another step in the foundation’s mission.
In the early days, Weis says, Hannah & Friends had small goals. Progress meant buying a bicycle for a child with special needs, or providing a bed to a kid who had never had his own.
“I thought God, if we could just raise $100,000 a year,” Weis says now. “If we could just do that. We’ve raised closer to $10 million over our time. It’s not $10 million, but it’s between $5 and $10 million we’ve raised. The endowment alone is $5 million.”
In the end, Maura says, they just want to raise awareness. There are still families out there raising a child with special needs. And on that day in early June, when the Weis family dropped Hannah off at her new home, Maura thought of them.
“There’s so many things that go on in lives of families that have people with different abilities,” Maura says. “It’s harder for them. To give them a little something, it really means a lot for them.”