Lens works to fund research for rare genetic disease
Cherokee Nation citizen Heather Lens in Washington, D.C., during one of her visits with the Tuberous Sclerosis Alliance with U.S. Rep. Markwayne Mullin and her mother Teresa Self. COURTESY
Cherokee Nation citizen Heather Lens, left, with her daughter Madilyn and her husband Chris after one of Madilyn’s brain surgeries in 2015. Madilyn was diagnosed at five-months-old with Tuberous Sclerosis Complex that causes tumors to grow on vital organs. COURTESY
Cherokee Nation citizen Heather Lens’ daughter Madilyn, who has Tuberous Sclerosis Complex, enjoys activities such as cheerleading. COURTESY
CATOOSA – After taking her daughter Madilyn to numerous doctor visits during the past several years and fighting to find a cure for the rare genetic disease Madilyn carries, Cherokee Nation citizen Heather Lens is advocating for children and others diagnosed with Tuberous Sclerosis Complex.
TSC, as it is more commonly known, is a genetic disease that causes tumors to grow on vital organs such as the brain, eyes, heart, kidneys, skin and lungs and can lead to complications of the function of those organs, according to tsalliance.org. It is estimated that one in 6,000 are born with the disease.
“My daughter was diagnosed with that disease when she was five months old. She was born completely healthy. When she started having seizures at five months old we took her to the doctor and they immediately diagnosed her with TSC. They saw the tumors in her brain. We were kind of thrown into this crazy world of what do we do now? Is our daughter going to be OK? They told us that she may never walk, may never talk, may never live an independent life. So it was a huge shock for sure,” Lens said.
Lens said Maddie, as she is called, was having more than 100 seizures a day, called infantile spasms, and had two brain surgeries in 2015. “Thankfully, she has not had a seizure since her brain surgery, which has been a miracle.”
Now at seven years old, Maddie makes multiple trips per year with her parents to a clinic in Memphis, Tennessee, that specializes in TSC for check-ups and yearly scans to monitor her tumors.
Maddie has tumor growth on her brain and kidneys. In 2018, the tumors on her kidneys began to give her problems and her blood pressure was also being affected, so now they are making the trip every three months.
“It was very hard to get up and go every three months. She has to go through yearly scans on her body. She has to have her brain and abdomen (scanned). We do MRIs every year to make sure the tumors aren’t growing or if they are at what rate. She has to be sedated for those. That is one of the hardest appointments because she has to be put under. It’s hard on her, obviously hard on us. So that has kind of been our new normal every three months,” Lens said.
After her daughter was diagnosed, Lens said she immediately got involved in the Tuberous Sclerosis Alliance, a nation-wide organization that works to fund research studies on TSC.
“The TS Alliance is the only organization out there who is doing everything they can to find a cure. They fund research studies. It’s a good organization that is really fighting for a cure,” she said.
After discovering there were local state chapters, but not one in the state of Oklahoma, she and another mother of a child with TSC, saw the need and began an Oklahoma chapter and started raising awareness through various events.
“So we knew that there was definitely a need for an Oklahoma chapter here. So we started that back in 2013. Then I did some small fundraisers here in our area. We were at the Strawberry Festival. We even put our TS logo on the shirts for the 5K run. Which was really cool to get some awareness brought that way,” Lens said.
In 2014, Lens was asked by the TS Alliance to be a part of the initiative that travels to Washington, D.C., to meet with congressmen and senators and ask them to continue funding the Tuber Sclerosis Complex Research Program.
“No one from Oklahoma was coming to the hill to meet with the congressmen and senators. So they asked me if I wanted to be a part of it and it was definitely something I wanted to do. Though…I was terrified because I knew nothing about politics. It wasn’t something that I was used to. It wasn’t something I felt very confident in. But, I did feel confident in how important research was for my daughter and for other people who have TSC,” she said.
In her first year at D.C. she and others in the alliance attempted to get Oklahoma congressmen and senators to sign a bi-partisan letter for the continuation of research funding and were met with no luck.
But the following year, Rep. Markwayne Mullin agreed to sign the letter, which led to every congressperson from Oklahoma signing the following year. In 2019, Mullin became a co-sponsor of the letter, which Lens said was a “big deal.”
“So Congressman Mullin has been a huge champion for the TS Alliance. He has done a lot for this research. But he’s also become a champion for TSC research for our community. Not just Oklahoma but the entire organization which covers the United States,” she said.
Thanks to the continued efforts in Lens’ and others advocacy work for TSC research, she said her daughter recently started a new medication that shrinks tumors.
“It came from this research program and it shrinks tumors. It’s not a cure by any means but it is treatment. It is just incredible the research program is directly impacting my daughter’s life now. It’s bittersweet. I don’t want her to be on medication, but the fact all the work that we’ve done with that research program and all the congressman and senators who signed on is directly impacting my daughter is really cool,” Lens said.
For more information on TSC, visit tscallliance.org