Westville Family Raises Awareness About Genetic Disease

Sunday, May 14th 2017, 5:10 pm

An Oklahoma couple wants to get the word out about a genetic disease that caused their young daughter to have more than 200 seizures every week.

May 15 is TSC Awareness Day, and a Westville mom and dad are trying to make a difference every day.   

Maddie Lens, like most 4-year-old girls, loves Disney Princesses and putting on her momma's lipstick. 

But, hidden underneath her long, brown hair, there's a scar that tells her story.

"You can see from and it goes all the way to over here," said Heather Lens, Maddie's mom.  

Maddie was diagnosed with Tuberous Sclerosis Complex at 6-months-old. 

TSC is a genetic disorder that causes tumors to grow on vital organs. 

For Maddie, they're on her brain, and at one point she was having 30 seizures every day. 

"She had seizures for, how many years...two and a half years and ended up having brain surgery," Heather said. 

She had just turned three when doctors removed a cluster of tumors causing the problem. 

That stopped the seizures.

"No more seizures," Maddie said.  

But it didn't take away all the tumors that would be nearly impossible.

"They can't even count them, she has so many," Heather said. 

For now, they're not hurting Maddie, so she gets to be a little girl.

Maddie's parents work every day to bring awareness to the disorder. They helped create a TSC Alliance for Oklahoma families.

More than 50 people showed up to their first meeting in Tulsa.

"We knew at that point that there was a need a community for resources and just to kind of be together in the hard times and in the good times," Heather said. 

Heather lobbies in Washington D.C for more research funding.

And this spring she walked the red carpet with some of Hollywoods biggest stars to present an award at an event that raises money for TSC.

"It was incredible," she said. 

They do it all because in the back of their minds they know Maddie's seizures could start again.        

"We always like to kind of hope for a miracle and so that's kind of in our hope for her is that she lives a normal life," Heather said. 

Just like the one she's living now.

For more information about the TSC Alliance website