There is no cure for epilepsy, and while medications can help, the Monast family in Chester County is doing everything they can to bring awareness to the seizure disorder that affects their 11-year-old daughter Reagan, writes Caroline O’Halloran for SAVVY Main Line.

Since she was diagnosed with epilepsy and cerebral palsy just before her second birthday, Reagan has had over 50 fully-convulsive seizures. Her seizures often come without warning, but as she gets older, she has been able to recognize the signs, sometimes in time to take her medication. For her parents, it never gets easier each time she has one.

But the Monasts have remained strong and watch their daughter grow every day to advocate for herself. As a fifth grader at Tredyffrin/Easttown Middle School in Berwyn, she even spoke about her disorder at school and everyone wore purple shirts for epilepsy awareness.

“It makes me so proud that she advocates for herself,” said Erin Monast. “She let them know that she might have a seizure at school and here’s what you need to do to help.”

The family has also created Reagan’s Run, a 5K run or 1-mile walk, that is taking place for the third year in a row this September. According to the CURE Epilepsy foundation, it affects more people than Parkinson’s, MS, ALS, and CP combined, but is severely underfunded.

“People just don’t know much about epilepsy – that’s what has fueled me to do this,” said her mom. “That doesn’t mean they don’t care. I just want people to understand what it’s like for us and for so many other families. Parenting a child with epilepsy can feel like a marathon. Every day we’re just fighting for a cure for our kids.”

Read more about Reagan’s journey in SAVVY Main Line.

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