For those who purchase school lunch, the face of Dining Services Manager Michal Cepler (’03) is a familiar one as she scans the ID of every student who buys lunch. What many don’t know about Cepler is that she has an 11-year-old son named Jacob with Tuberous Sclerosis Complex (TSC).
According to the National Institutes of Health (NIH), TSC is a rare genetic condition that causes non-cancerous tumors to grow in the brain and throughout the body. Most people with the condition experience seizures, developmental delays, intellectual disabilities and
autism. There is currently no cure, and because of its rareness, there is not much funding for research.
The Step Forward to Cure TSC Walk was founded to help raise funds nationally for TSC research. This year, 529 communities will participate in local TSC walk-a-thons across the country from April 12 to June 7. Cepler has co-chaired the walk in Rockville since 2017 and is very involved in raising funds for the disease.
This year’s Rockville walk takes place on May 18 at 9:30 a.m at the CESJDS Upper School. Participants will walk three times around the school: once for those newly diagnosed, the second time for those living with the disease and the third for those who perished from the disease. Signs highlighting different people with TSC will be found around the school, which Cepler says “helps give people a reason to walk around the school and puts faces to the disease.” She is expecting around 300 people to show up.
As a parent whose child has TSC, life can be complicated for Cepler, and she has to dedicate much of her time to her son.
“Caring for a child with TSC is incredibly complex,” Cepler said. “We are dealing with two sides of the situation: the medical issues and the behavioral issues. The first two years were the hardest. We had to bring him to appointments every few weeks, so I was at 10 different doctors with him multiple times a week. Since it is a rare disease, I didn’t know anyone else with a child in the same situation to ask for help or advice.”
The TSC walk is meaningful for Cepler because it offers a community she can rely on.
“Having a complex child can be very isolating,” she said. “Having a community that understands the challenges we face, not just when the big stuff happens but all the time, is crucial.”
Cepler’s co-chair of the walk, Lauren Shores-Shillinger, loves working with Cepler and seeing the walk and support for children with TSC grow every year.
“We love doing it for our kids and for all the TSC warriors in our community,” Shores-Shillinger said. “It is just an awesome event to be working on together.”
Shores-Shillinger has an 11-year-old daughter, Brinley, with TSC, and prefers to look at being a TSC mother and a co-chair of the walk as a way to advocate for TSC rather than as a challenge.
“I feel like we have turned adversity into advocacy and have found ways to connect with other families like ours,” Shores-Shillinger said. “We always say that we want to have hope, no matter how complex a situation is, and this is a way for us to feel hopeful, like there’s something we can do that’s tangible as a community.”
