Tuberous Sclerosis Clinic

Patient Stories | Meet Lennon

Finding the Right Team: A Florida Family's Journey to Cincinnati Children's for Tuberous Sclerosis Complex (TSC) Care

Megan Self was born with tuberous sclerosis complex (TSC) and knows what it’s like to live with a variety of symptoms, as well as the appointments, scans and specialist visits that go along with treatment.

And as Megan and her husband, Josh, started planning their family, she knew that experience was one thing she never wanted to share with their child.

TSC is a rare, genetic condition in which noncancerous tumors grow in the brain and other organs. While the tumors themselves are benign, they can cause seizures, heart and kidney problems, and other health issues. About 1 in 3 cases of TSC happen when a parent passes on a genetic mutation. The other two-thirds of genetic mutations occur at random.

In Megan’s case, no one else in her family had TSC—a random mutation caused it. But because she knew she had a 50% chance of passing TSC to her child, Megan and Josh planned to reduce the chance with a specific type of egg retrieval. However, during the process, she learned she was pregnant.

At 13 weeks’ gestation, Megan got a chorionic villus sampling (CVS) test, which is used to detect genetic problems in the fetus. The results came back positive. Her daughter, Lennon, would have TSC.

“I was mad at myself because I had said I’d never let my kid have TSC, and then I did,” Megan said. “I had extreme mom guilt.”

Managing More Than a Diagnosis, Finding Cincinnati Children's

Megan quickly channeled that guilt into action. Even before Lennon was born, Megan knew she wanted to take her to the TSC clinic near their home in Bradenton, FL. It’s where Megan has gone for most of her life. Unfortunately, the first available appointment for Lennon was almost a year away.

When Lennon was around 4 weeks old, additional testing showed she had tumors in her brain, including a subependymal giant cell astrocytoma (SEGA), one of the bigger brain tumors associated with TSC.

As she grew older, Lennon began having unusual, jerky movements in her arms. An electroencephalogram (EEG) showed focal seizures, and she was put on anti-seizure medication. At 6 months old, Lennon visited the emergency department for infantile spasms. But the primary drug for treating infantile spasms was not immediately available locally. It took weeks and help from the TSC Alliance to get the medication Lennon needed.

During this time, Lennon ended up on five different medications, weaning on some and off others. She was taking steroids that made her swollen, fussy and restless. Lennon’s everyday care turned into a constant balancing act for her family.

At an annual advocacy event that Megan attended, she expressed her frustration with Lennon’s fragmented care to other parents in the TSC community. Several of them encouraged Megan to seek a second opinion at Cincinnati Children’s.

A Turning Point in Lennon’s Care

As someone who has lived with TSC her entire life and now advocates nationally for better TSC care, Megan felt a responsibility to make sure Lennon’s care reflected the most current expertise and options available.

She called the TSC Clinic at Cincinnati Children’s on a Tuesday and had an appointment with them the following Wednesday. She spent the week transferring records and applying for funding from the National Organization for Rare Disorders (NORD), which helps pay for some lodging and transportation.

At Cincinnati Children’s, Megan and Lennon met with David Ritter, MD, PhD. The family found a team that took the time to listen to their concerns, review Lennon’s history and look more closely at her seizures and overall condition.

“The minute we met the team at Cincinnati Children’s, we knew this was where we wanted Lennon’s care to be,” said Megan. “Dr. Ritter really took the time to look at everything.”

An EEG and additional testing gave Dr. Ritter and the team a more complete picture of Lennon’s seizures and overall condition. Based on the results, Dr. Ritter recommended sirolimus, a medication used to treat certain complications of TSC. Megan was able to pick it up at the Cincinnati Children’s pharmacy.

In addition to the right medication, Megan and Josh found the personal attention and collaborative care they were seeking for Lennon. The Cincinnati Children’s team answered their questions and developed a coordinated plan for managing Lennon’s seizures, medications and ongoing TSC care. The experience gave the family confidence that they had found the right team to guide Lennon’s TSC and neurological care. They ultimately decided to make Cincinnati Children’s their primary provider for those needs.

Specialized Care, Even From Florida

Choosing Cincinnati Children’s didn’t mean the Selfs had to leave their local doctors behind. Because Lennon lives in Florida, her Cincinnati Children’s team uses telehealth to stay connected with the family between in-person visits.

Megan and Josh can meet with the team virtually to discuss Lennon’s ongoing needs, including when she may need EEGs or lab work. Lennon continues to see her Cincinnati Children’s specialists in person during regular visits, while her cardiologist and nephrologist remain in Florida.

This combination of care provides the best of both worlds: specialized TSC and neurological expertise from Cincinnati Children’s, along with local specialists who can care for Lennon close to home.

A Plan and a New Path Forward

In July 2026, Lennon celebrated her first birthday. She’s crawling and pulling herself up, and she loves to be in the water—especially during the hot Florida summer.

Megan is grateful for her knowledge of TSC, which helped her be proactive. She hopes her experience shows other TSC families how important it is to pursue the care that is right for them.

“Trust your instincts,” she says. “If you think something’s wrong with your child, get them checked. Even if it’s nothing, it’s better to know.”

Now, Megan feels confident that Lennon has a team that understands the complexities of TSC and has a plan to partner with their family for years to come.

(Published September 2026)