The world of special needs parenting isn’t necessarily a club any of us signed up for. It’s one we were thrust into and had to accept to simply survive. When you think about it though, an initiation into the special needs siblings club might be even…
The Journey to the Truth
— Meagan Earley

Meagan Earley lives in Paris, Texas, with her three children, dogs, cats, and a turtle named Carl. She is a preschool teacher and a caregiver to her daughter, Austen, who was diagnosed with Dravet syndrome in 2016. Meagan has relied on her village of other Dravet syndrome caregivers in the years since Austen’s diagnosis, and writes her column in the hope of paying it forward to other parents who are fighting each day to help their child thrive in all circumstances.
My mind has been filled with memories of my 9-year-old daughter, Austen, since she passed away from complications of Dravet syndrome 16 months ago. Some days, it’s all I can do to think of anything else besides the constant flood of moments with her that my mind wants to…

It was the summer of 2016, and I was trying my best to finish my grocery shopping with three kids in tow. My list was short and the store was slow that morning. It should have been a fast and easy trip. But the calming music dancing through…
The Journey to the Truth
When my daughter, Austen, first started seizing at 5 months old, we were told that it was probably just febrile seizures … even when she went into a status seizure two days later, had to have a code blue called, and was transferred to a bigger hospital with…
“It’s probably just a febrile seizure. It happens to one in 25 children, and 60% of those kids will never have another one. She’s going to be fine.” Those were the words spoken to me by the emergency room doctor, a…
I was alone in the car on a hot May day. My daughter, Austen, who had just turned 1 and was baptized the previous day, slept in her car seat while my husband ran into the store. Then the phone rang. “Her test…
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- Zorevunersen shows long-lasting seizure control in Dravet patients
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