Meet Tanmayee: A Story of Resilience, Reinvention, and the Power of Connection

Written by: mejo

For Madhura, life changed forever when her daughter, Tanmayee, was diagnosed with Lennox-Gastaut Syndrome (LGS). A severe form of epilepsy. Tanmayee’s journey has been filled with challenges, from relentless seizures to complex care decisions. But it is also a story of resilience, reinvention, and the strength of a family determined to give their daughter the best life possible.

From Subtle Delays to a Life-Altering Diagnosis

Tanmayee's early months were mostly typical, with no signs of a medical condition. But as she grew, subtle delays in basic milestones—like head control—raised questions.

“We were so lucky to have a pediatrician who actually listened,” Madhura recalls. “He didn’t dismiss our concerns. Instead, he ordered a full range of tests and got us connected with a pediatric neurologist.”

Despite extensive genetic testing and early intervention, Tanmayee’s diagnosis remained elusive. It wasn’t until she turned one that her seizures began—a few myoclonic spasms at first, but quickly escalating. Within just three months, she was experiencing hundreds of seizures a day, in four different forms—including the dreaded Infantile Spasms.

“I remember feeling completely overwhelmed,” Madhura says. “Suddenly, we were trying everything—steroids, a ketogenic diet, multiple medications, and eventually, a VNS implant. She was the youngest patient at the hospital to get that device—just 27 months old.”

Parenting Redefined

For Madhura and her husband, raising Tanmayee has meant redefining parenthood. What might be a hands-off, exploratory approach for a typical child became an all-encompassing, hands-on experience.

“On any given day, I’m not just her mom—I’m her therapist, her teacher, her case manager, her advocate,” Madhura explains. “Every decision is scrutinized, whether it’s by doctors, therapists, or school staff. But at the same time, we’re the ones connecting the dots—making sure they see her as a whole person, not just a list of diagnoses.”

Navigating Tanmayee’s care has meant living in a constant balancing act. The family has tried countless medication combinations, adjusted her VNS settings to their maximum, and even had to abandon the ketogenic diet due to gut complications. Complete seizure freedom isn’t an option, but they have found a measure of stability.

“We’ve learned to celebrate the small victories,” Madhura shares. “Some days, it’s just about making it through without a major incident. Other days, it’s seeing her smile, hearing her laugh, or watching her connect with someone.”

How mejo Became a Lifeline

For Madhura, one tool has made an unexpected difference mejo, a digital care companion app designed for families navigating complex health conditions. The feature that has proven most valuable? The “Getting to Know Me” section.

Three years ago, during one of Tanmayee’s hospital stays, a misunderstanding led to a frightening experience. The medical team, unaware of what her typical seizures looked like, administered a rescue medication unnecessarily.

“It was a nightmare,” Madhura recalls. “Tanmayee was already dealing with so much, and then she was heavily sedated because the team didn’t realize her non-convulsive seizures are actually normal for her. That’s when I realized how critical it is for every provider to understand her unique presentation.”

That experience changed everything for Madhura. It highlighted the need for clear, accessible information about Tanmayee’s condition—something that mejo now provides.

“Recently, we had to take Tanmayee to the emergency room for breathing issues, which turned out to be pneumonia,” Madhura shares. “We needed to transfer her to a children’s hospital that knows her case. I printed her mejo profile and gave it to the transport team. It was a game changer.”

Instead of trying to remember every detail of Tanmayee’s complex medical history in a high-stress moment, Madhura could focus on comforting her daughter. And the impact didn’t stop there.

“When we got to the hospital, everyone who came in called her ‘T’—which is how she likes to be addressed by non-family members. I knew they had actually read the profile. That little detail meant the world to us.”

Balancing Care and Career

Madhura and her husband both work full-time corporate jobs from home—something they can manage only because Tanmayee is able to attend full-day school. But that doesn’t make the caregiving load any lighter.

“It’s a juggling act. Some days, it feels like I’m switching between work meetings and being a full-time nurse or advocate,” she admits. “That’s why tools like mejo are so critical. They save time and ensure that the people who support Tanmayee actually understand her.”

Building Community Through Caffeinated Caregivers

Beyond their own journey, Madhura is committed to supporting other caregivers. She serves on the board of Caffeinated Caregivers, an organization that provides a community for those navigating the complex world of caregiving.

“Being a parent-caregiver can be incredibly isolating,” Madhura says. “But when you have a community that gets it—a place where you can share your struggles, your wins, and even your darkest moments—it makes all the difference.”

https://www.caffeinatedcaregivers.com/

Final Thoughts: Seeing the Whole Person

Madhura’s story isn’t just about seizures or complex care plans—it’s about seeing Tanmayee as a whole person. A child who loves being called “T,” who needs comfort during a crisis, and who has a family that fights fiercely for her every single day.

“Ultimately, that’s what it’s all about,” Madhura reflects. “Not just managing a condition, but making sure Tanmayee is seen, known, and loved for who she is.”

Inspired by Madhura and Tanmayee’s journey?Visit mymejo.com to learn how mejo can help you organize, share, and advocate with confidence.

To learn more about LGS: https://www.lgsfoundation.org/