A Day in the Life of a Caregiver to a Child with Dravet Syndrome

Author: Adel Bounif

My name is Adel Bounif. My daughter has a severe and genetic form of epilepsy, called Dravet Syndrome.

In the morning I have to wake up my daughter to give her medication (3 times per day) and I give her breakfast. Then I help her to take a shower, to brush her teeth, and to dress because she is not independent.

Dravet Syndrome is not only seizures. This is a very severe syndrome.

She has a lot troubles associated to it such as sleeping troubles, motor and psychomotor troubles, food troubles, developmental delays, cognitive disorders (she’s 9 years old but she is like a baby), and huge language delays.

This is why as caregivers, my wife and I assist her all day long.

Then I take her to school for disabled children. She stays only the morning because she’s having many seizures during her sleep and nobody can monitor it. This is too dangerous to leave her alone during her sleep because of the risk of SUDEP. When she comes back from school, she goes to sleep for at least two hours because she is very tired.

Then I gave her more medication.

During the afternoon I play with her (puzzles, paintings, drawings…) My daughter has psychomotricity and speech therapy sessions at her school in the morning. At the end of the day, I give her more medication again and then it’s time for diner. When it’s time to go to sleep (very late), I tell her a story.

This is my day-to-day as a caregiver. I am also the author of Epilepsy: the invisible pain, a book I wrote after my daughter was diagnosed with Dravet Syndrome.

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