Mother & Daughter Won't Let Their Epilepsy Define Them
'This is now just who we are. This is us.'
Bonita Ocampo stood on her grandmother’s porch and performed for her cousins. Her guaranteed laugh was her impersonation of Pee-wee Herman. After all, nothing was funnier than Pee-wee in the 1980s.
Then her diagnosis of epilepsy at 7 years old changed this “big character” into a shy little girl, afraid of what people would think if she had a seizure in front of them. When she attempted to return to the porch and entertain her cousins, she had a seizure. They thought she was joking and they all laughed.
“I'm just really a friendly person and I love people,” Bonita said. “I feel like a piece of that was taken away because of my epilepsy.”
Now this 36-year-old mother of four refuses to let the disease that defined her for so long do the same for her 10-year-old daughter Francesca.
“Francesca is so vibrant and full of life. I don’t want her to ever lose that and I never want her to feel the way I did,” Bonita said.
Bonita and her husband, Charles, were concerned about the risk of epilepsy for their two older children Jace, now 15, and Trace,13. But with vibrant and healthy boys, the threat of epilepsy was “off our radar” by the time Francesca was born.
When she was 4 years old, preschool teachers told Charles and Bonita that Francesca threw up a few times during nap time. They didn’t mention anything about convulsions during sleep. But when one of the teachers said Francesca wasn’t making eye contact with them after the nap, Bonita’s intuition told her it was epilepsy.
“In my heart of hearts I knew and I didn't want that for my daughter,” Bonita said. “My husband was not really accepting of that idea. He tried to reassure me, ‘It doesn't have to be that. She might just have a stomach ache or a virus.’ I just felt it.”
The family was referred to a neurologist for a sleep study in their then home of San Antonio and within minutes, they saw Francesca’s arm twitch. It affirmed to Bonita what the EEG would eventually show – Francesca did have epilepsy.
Bonita gave into a short period of beating herself up. After all, she of all people should have recognized the signs of epilepsy she thought.
But the self-pity didn’t last long. Instead, Bonita developed a new resolve. She wouldn’t let her daughter fall into the same trap that she did as a child following her diagnosis. She would become an advocate for her daughter.
“There was a fire lit inside of me that had been missing for a long time because it's totally different watching your child go through this than when it’s yourself going through it,” Bonita said. “The comfort I took as a child was at least I didn’t remember the seizures after they happened. Even though people would tell me, I could get past it eventually. But this is different, seeing it and then it being your child. The time I’m waiting for her to breathe and take that breath … Just for the seizures to stop … it seems like an eternity.”
Following Charles getting his law degree, the Ocampo family returned back to their hometown of Fort Worth. Francesca began seeing Scott Perry, M.D., an epileptologist and medical director of the John and Jane Justin Neurosciences Center at Cook Children’s.
Dr. Perry upped Francesca’s dosage of medicine and has been her doctor since 2013. And Francesca tells her mom all the time how funny he is.
Laughter comes easier to the Ocampo family now. Francesca is the proud older sister of Beau, 3 years old, and is doing well with her epilepsy.
“Francesca’s outlook on life is exactly what we all want for our patients. She won’t let her epilepsy define her, she takes care of herself and she enjoys just being a kid,” Dr. Perry said. “As neurologists, it is our job to help patients and their families get their lives back.”
“The things I have dealt with in my life and even in my adulthood because of epilepsy have been difficult, including depression and anxiety.” Bonita said. “What’s changed my outlook on my own epilepsy is wanting to be an example of life and not an example of fear for Francesca. But because of the way she lives her life, Francesca has inspired me.”
Francesca describes herself as “just a big fireball” who refuses to let her condition get her down. She’s began the Fort Worth Academy of Fine Arts this year and plans to use November, Epilepsy Awareness Month, as an opportunity to explain to her new classmates about living with epilepsy.
“It’s not that I don’t care that I have epilepsy,” Francesca said. “I just feel I’m a normal person like everybody else. I take meds and I have to go to the doctor sometimes and get checkups. What’s happening in here, in my brain, is not epilepsy. It’s just my normal brain. There are just some tweaks to it that makes it kind of weird. I don’t have anxiety at all. The only time I get a little sad is maybe when I have seizure. I’m usually always fine.”
Someday, Francesca wants to sing and be in musicals. But it’s her bold outlook on life that’s helped her mom change the role she’s played since a child from being “scared of my life to stepping out” in the forefront.
Francesca asked Bonita to join her in the pool last year. Bonita told her she’d never learned to swim because she was afraid she would have a seizure in the pool and people would see her. Francesca told her mom not to be afraid and she would teach her how to swim. A year later, Bonita is a swimmer.
Bonita’s drive now is to raise awareness for epilepsy. She wrote a letter to the city of Fort Worth earlier this year that culminated with a proclamation for the local Epilepsy Foundation. She researched to contact the right person at Sundance Square to get the city to go purple for Epilepsy Awareness Month in November and reached out to Cook Children’s to do the same.
“I was so proud of the Ocampo family for helping raise epilepsy awareness and I’m equally proud of the medical center for supporting their efforts,” Dr. Perry said. “Sure, our primary goal as physicians is always to help patients become seizure free, but even more important than that is making sure their quality of life is the best it can be. Part of that goal is making sure everyone is educated about epilepsy, so that fears and misconceptions about the disorder are erased.”
And Bonita plans for this to be only the beginning as she wants people to know what life is like for people living with epilepsy.
All of this because a daughter’s condition has given her mom a new outlook on life that she thought had been lost on her grandmother’s porch nearly 30 years ago.
“Francesca is everything, the very embodiment, I wished I could have been,” Bonita said. “It’s not a vicarious, living through my daughter type of thing. I just don’t want that wonderful sense of fun to fade away in her. Francesca has helped me so much. That’s the cool thing about us. By me not wanting her to ever get to that point of fear and anxiety while wanting to be more of an example to her, I have been put in a position where I have to step outside what I was. Where I did feel like it defined me. I don’t feel that way any longer. This is now just who we are. This is us.”
Cook Children's Epilepsy Program
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