When Chris and Heather Lens learned their baby girl, Maddie, had Tuberous Sclerosis Complex (TSC), they were devastated.
The disease, which causes tumors to grow on a person’s organs, such as the heart, brain, lungs and skin, is rare, and it was something neither Chris nor Heather have heard of before. Nationally, approximately 50,000 people have been diagnosed with TSC -- and only about 1 million people worldwide have been diagnosed.
“When you have a child, you’re excited about their future – is she going to be a cheerleader, what kind of car is she going to drive. When we got that diagnosis, it almost felt like those things were being ripped away from us,” Heather said. “We had no clue what her future was going to look like.”
At first, the fear of what Maddie’s future will be like swept over the Oklahoma family; then came determination to find the best care possible for their daughter.
After doctors in Oklahoma determined last fall that medications were no longer effective with controlling Maddie's seizures, doctors said brain surgery was necessary and the Lens family was referred to Le Bonheur. Under the care of the hospital’s TSC specialists, Maddie underwent two brain surgeries in November to remove the tubers that were causing her seizures.
Since the surgery, it has been more than four months since her last seizure.
“Sometimes it’s hard to believe we are living this life without seizures,” Heather said.
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