“You never know when that one seizure is going to happen and that will be the last time that you hold your child,” Krispen Jones, Baylee’s mother, said.
For Krispen, cherishing moments with her daughter is something she has to do every day.
“There is not a moment of my day that goes by that I don’t sit there and think, ‘ is today going to be the day that she is going to have a seizure and is it going to be a bad one?’” Krispen said.
Most kids with Dravet Syndrome rarely make it to age four, Krispen said, but Baylee is improving every single day.
“A lot of the kids with Dravet, they end up having to get feeding tubes. She doesn’t have to have that, hopefully she never will. We really push for her to eat and drink,” Krispen said.
Two years ago, Krispen said she had never even heard of Dravet Syndrome until Baylee started having seizures.
“When she has seizures, bad ones, she’ll have them for - the longest one has been two hours,” Krispen said.
After months of being sent to Texas Children’s Hospital in Houston via life flight, Baylee was finally diagnosed by a team of neurologists at Memorial Hermann Hospital.
“It’s devastating because Dravet changes - it impacts every aspect of your life, of the family’s life, the caregivers, it's just devastating,” Krispen said.
Baylee’s seizures can range from five to 35 minutes, and someone has to be with her 24/7, Krispen said.
However, through occupational and speech therapy, Baylee is making strides. Krispen said most kids Baylee's age are at the developmental stage of a six-month-old. Right now, Baylee has tested in the development stage of a child her age.
“Baylee’s lost words before or lots of things. She’s never; luckily, with the length of her seizures, she’s never lost how to walk or talk, but it is a possibility and all it takes is one. Just one and you never know what’s going to happen,” Krispen said.
Despite Baylee’s accomplishments, Krispen said she will have to live with Dravet Syndrome for the rest of her life.
“There’s no cure. She’ll never outgrow this. She will always have it and if she makes it to adulthood, which we pray that is going to happen, and you know, everything’s going to be great. But she’ll never be mainstream,” Krispen said.
Yet, they are hopeful, Krispen said, adding that with Baylee’s improvements, staying positive gets easier every day.
If you have a survivor’s story or know of someone who has overcome a life challenge, email Michelle Reed at firstname.lastname@example.org.
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