Local family helps make a difference raising awareness
In 1995, Lola Centeno and her husband, Carl, were awaiting the birth of their youngest child — a daughter. Lola Centeno said when Megan was born, she was perfect. Like most new parents, Centeno checked out her newborn thoroughly and noticed some white spots, which doctors said were nothing serious.
“Megan was walking by nine months old and talking above her age level at 18 months,” Centeno said.
One evening, Centeno discovered Megan was running a lowgrade fever and, thinking it was nothing serious, put her to bed.
“My son found her having a seizure a few hours later,” Centeno said. “I rushed her to the hospital, and they had to put her on life support for a few days.”
Centeno’s husband was serving in the Navy on a submarine at the time, and within a few days, she was trying to contact him to let him know their daughter had been diagnosed with a rare disease called tuberous sclerosis.
“We had never heard of TS,” Centeno said. “And the doctors only knew enough to diagnose her.”
But armed with this diagnosis, Centeno was able to get help for her daughter and control the seizures. TS is sometimes genetic but can also be the result of a spontaneous mutation. It causes tumors to form in many organs, primarily in the brain, eyes, heart, kidney, skin and lungs. It is characterized by seizures, developmental delays, intellectual disability and autism.
When Megan was about 3 years old, the seizures returned, with Megan having them multiple times daily.
“She was in pretty bad shape,” Centeno said. “And there was simply not a lot of information available at the time.”
Though the family was stationed in Connecticut, Centeno discovered there was a clinic devoted to the treatment of TS in Cincinnati.
“I met Megan when she was 5 years old,” said David Frantz, MD, director and founder of the Tuberous Sclerosis Clinic, part of the division of neurology at Cincinnati Children’s Hospital. “We know that TS affects every organ of the body, and in Megan we were able to manage it all.”
In fact, the clinic specializes in finding new treatments and controlling TS symptoms. When the clinic started seeing patients in 1992, Frantz said they had no idea what caused the disease and didn’t have many treatment options. Today, patients like Megan, now 26, are able to improve their quality of living greatly through advanced treatment and medication protocols.
“When I found out about the center in Cincinnati, we asked our military doctor to send us there,” Centeno said. “Once we met Dr. Frantz, I knew we would move back to Dayton once Carl retired.”
Having lived in Dayton before, the family came back in 2005 so Megan could be close to the clinic. Frantz connected them with the Tuberous Sclerosis Association, where the family was able to connect with others dealing with the same disease.
“We joined the TS Association because we wanted to become more involved and help other families,” Centeno said. “We became the chairs for Ohio and did that for about seven years.”
Centeno and her husband hosted meetings, held special events and planned local outings for TS families. They also participated in the organization’s annual March on the Hill to help increase awareness and funding for the disease.
“As Megan continued to get older, her seizures were under control and she wanted to get more involved with the organization that helped us all,” Centeno said. “She is currently a moderator on the Facebook page for young adults with TS and is a trained mentor.”
Funding for research for rare diseases like TS can often make a major impact. Scientific breakthroughs have helped Frantz and other physicians prescribe treatments that often reduce or completely eliminate seizures.
“The clinic has changed our lives,” Centeno said, “Megan went from daily seizures and not functioning very well at all to increasing her IQ, being able to work and have a normal life.”
Though Centeno admits that her daughter still struggles with cognitive skills, she has been able to secure a factory job and can understand what is involved in her disease. She is married and lives in Troy. The entire Centeno family, including Megan’s three siblings, live in the Dayton area.
“I know Megan has strength inside of her because she knows what she has experienced,” Centeno said. “Helping other families see there is a better outcome and other side to the disease has helped her as well. TS is definitely life changing, but, with treatment, people can come through it and be OK again.”
For more information, go to https://www.cincinnatichildrens.org/service/t/ tuberous-sclerosis.