nottodaydravet hashtag performance

#NotTodayDravet: A call to action, a rallying cry against Dravet Syndrome's challenges. Sharing experiences, seeking support, raising awareness, fostering hope, and celebrating resilience within the community.

Of course I got to follow a down on the dumps video with a happy one, because that’s how amazing m

Of course I got to follow a down on the dumps video with a happy one, because that’s how amazing m

I’m so grateful for the quick recovery B makes from his seizures lately. He was in such a happy mo

I’m so grateful for the quick recovery B makes from his seizures lately. He was in such a happy mo

Many new followers since I made this video last year and so many ask how we keep B’s ride on going

Many new followers since I made this video last year and so many ask how we keep B’s ride on going

Happy Friday!! A little throwback to start our weekend off in a happy place 😄 #onthisday #dravets

Happy Friday!! A little throwback to start our weekend off in a happy place 😄 #onthisday #dravets

After a 10 minute seizure yesterday where he hurt his face again 😔 we make up for it today with a

After a 10 minute seizure yesterday where he hurt his face again 😔 we make up for it today with a

Oh memories. 🥹 #onthisday #dravetsyndrome #fyp #family #memories #nottodaydravet #bseizurefree #�

Oh memories. 🥹 #onthisday #dravetsyndrome #fyp #family #memories #nottodaydravet #bseizurefree #�

Friday was a tough day. It sucks that Dravet not only affects B but it also has impacts on the entir

Friday was a tough day. It sucks that Dravet not only affects B but it also has impacts on the entir

B’s little shadow. @KidscleancarOfficial #dravetsyndrome #fyp #trend #anxiety #spring #springbreak

B’s little shadow. @KidscleancarOfficial #dravetsyndrome #fyp #trend #anxiety #spring #springbreak

So grateful for our son’s AAC device. B is non speaking due to Dravet Syndrome but understands eve

So grateful for our son’s AAC device. B is non speaking due to Dravet Syndrome but understands eve

The beach has always been a huge seizure trigger for B. As he gets older however, he’s able to las

The beach has always been a huge seizure trigger for B. As he gets older however, he’s able to las

B’s face is still healing from Saturday’s seizure 😔 but we got what sounded like a new word f

B’s face is still healing from Saturday’s seizure 😔 but we got what sounded like a new word f

We had a horrible week of seizures and B didn’t get to do much of what I had hoped for him. Today

We had a horrible week of seizures and B didn’t get to do much of what I had hoped for him. Today

Gait issues go along with Dravet Syndrome. Many people have issues walking due to it. B is fortunate

Gait issues go along with Dravet Syndrome. Many people have issues walking due to it. B is fortunate

Replying to @signsbyelf since we hit 100k and are feeling all the emotions today, we took you up on

Replying to @signsbyelf since we hit 100k and are feeling all the emotions today, we took you up on

Replying to @PurduesaBasketballschool before B had a nurse with him at school, he always had a 1:1.

Replying to @PurduesaBasketballschool before B had a nurse with him at school, he always had a 1:1.

When it rains it pours right? Thats what happened in our dining room last night so today was a bit h

When it rains it pours right? Thats what happened in our dining room last night so today was a bit h

I don’t think I ever give my husband enough credit! This was last year. He worked full time then w

I don’t think I ever give my husband enough credit! This was last year. He worked full time then w

Just another day with Dravet. I hate school seizures. Not being in control of what’s occurring tak

Just another day with Dravet. I hate school seizures. Not being in control of what’s occurring tak

Packing for a beach trip involves a lot of packing. Especially since we are renting a house and need

Packing for a beach trip involves a lot of packing. Especially since we are renting a house and need

Replying to @fin111230 a 30 minute seizure isn’t setting this kid back. Sadly, it’s pretty much

Replying to @fin111230 a 30 minute seizure isn’t setting this kid back. Sadly, it’s pretty much

Seems befitting. World Purple Day where you wear purple to raise awareness of Epilepsy and it ends w

Seems befitting. World Purple Day where you wear purple to raise awareness of Epilepsy and it ends w

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