Owasso 11-Year-Old Lobbies In Washington For Research On Genetic Disease, TSC

An Owasso 11-year-old is back home after a week in our nation's capital.

She is hoping lawmakers will continue to support funding for research for the genetic disease she has known as TSC.

Looking back at almost a week in Washington leaves 11-year-old Maddie Lens with a whirlwind of memories.

With stops at the White House, the National Air and Space Museum, and the Museum of the Bible, Maddie and her mom got to do a lot of exploring.

But Maddie's mission was to make her mark at the US Capitol, getting the attention of lawmakers.

"They were listening really well," Maddie said.

The fifth grader was diagnosed with Tuberous Sclerosis Complex when she was six months old. The disease, which affects an estimated 50,000 Americans, causes tumors to grow on organs. Maddie’s tumors were on her brain. Before Maddie had brain surgery in 2015, she used to have 200 seizures a week. While Maddie's seizures have stopped since then, she now takes medication for her kidneys.

"There's some sports that I can't really do 100 percent on,” she said.

As she met with Oklahoma's delegation, Maddie got commitment and support for a bill from everyone she met with. Several lawmakers told her they would sign a “Dear Colleague Letter” in support of the bill.

Since 2002, Congress has set aside a total of $113 million in grant money for TSC research, with bipartisan support. Maddie is lobbying for that support to continue.

"We're trying to get money so that way we can give it to scientists to find a cure,” Maddie said.

Her mom, Heather, and dad, Chris, remember being told Maddie might not walk, talk, or live independently. Now, she's strolling the halls of Congress.

"It was kind of a dream,” Heather said. “I remember starting this ten years ago and being excited that I could advocate for my daughter. I never in a million years thought that I would get to a point where she would be out there advocating for herself and others in Oklahoma."

"It felt really encouraging,” Maddie said.

And for the pre-teen, it's just the beginning of her push for progress.

For more information, visit the TSC Alliance website here.