Santa Barbara mom advocates for disabled son
Theo Apostolopoulos, now 18, was just three months old when he started having spasms. His mother Jennifer Griffin took him to doctors and after a handful of years, realized Theo had more than epilepsy.
“One day, I turned to his neurologist and asked ‘Is this Lennox-Gastaut Syndrome?’ He said yes, but I already knew it was,” she told the News-Press.
Lennox-Gastaut Syndrome is a rare epilepsy syndrome. LGS patients have multiple types of seizures, and it often starts in childhood.
About 3 to 4% of children with epilepsy and 1 to 2% of adults with epilepsy have LGS.
Today is Rare Disease Day, a day of awareness held the last day in February. Last year, Ms. Griffin and Theo met up with other LGS caretakers and patients.
“When you have a rare disease, other families that are experiencing the same thing are not usually nearby. Every once in a while, it’s nice to connect with other caregivers,” she said. “It’s really comforting.”
The diagnosis of LGS didn’t change Theo’s treatment plan because doctors mainly treat symptoms. (There is no known cure for LGS.) But the diagnosis brought a community.
“You need all the scientists, the researchers, but you also need people that can understand what you’re going through at any certain time,” Ms. Griffin said.
She works as the director of family support services for the LGS Foundation after previously working with families of special needs children.
Ms. Griffin frequently went to support groups for special needs families and met another mother of a child with LGS one day. She told her about a conference for LGS patients and their caretakers, and Ms. Griffin signed up.
She felt at home at the conference among 300 to 400 attendees with similar experiences to hers.
“I felt really overcome with how important it was for me to see all these other families that look like mine, and children that look like mine,” Ms. Griffin said. “I thought, ‘Wow, I really feel like an adoptive child who just found her birth family.’ ”
In her job with the LGS Foundation, she connects caretakers with resources and helps run a Facebook group for caretakers.
Members give tips, like using pool noodles to put bumpers on furniture, a necessity when Theo falls during a seizure.
Many families are afraid of their child having a seizure in public, so they isolate. But Ms. Griffin prefers to go out and educate others about LGS.
Prior to COVID-19 lockdowns, she visited schools to educate students about disabilities. She encourages students to say “hi” when they see Theo and ask her questions.
“If you can’t share that kind of stuff, then people are going to think there’s something wrong with being curious. And if there’s something wrong about being curious, they’ll think there’s something wrong with Theo,” she said.
Awareness is important to her. Right now, she doesn’t feel like care facilities could support Theo.
“I hope there’s some place for him. Right now, that world does not exist,” she said. “When I can’t care for him anymore, there’s not a clear path of where he can go.”
The LGS Foundation seeks more research about LGS and provides grants annually.
“We won’t stop until we find a way to help our kids and give them a better quality of life,” she said. “Every month or two, we’ll lose another child with LGS. There’s an urgency in what we do.”
The LGS Foundation is one of 30 patient-led disease organizations in the Rare As One Project, an initiative created by the Chan Zuckerberg Initiative to accelerate rare disease research.
“(LGS) is like so many rare diseases; you really have to get the word out there, really inspire people to discover who you are, and hopefully at some point we can do fundraising that would increase our capabilities,” she said.
The pandemic has slowed her awareness initiatives. Rare Disease Day is one of few opportunities she has to show what makes Theo special.