dravetsyndrome hashtag performance

#DravetsSyndrome: heartbreaking, rare, severe epilepsy. Challenges daily life, seizures, development. Advocacy, awareness, support. Families fight tirelessly. Hope, research, resilience, love.

Replying to @tv_devil at this point, we take everyday we get with B. As our community mourns another

Replying to @tv_devil at this point, we take everyday we get with B. As our community mourns another

B loves when his siblings join him for a ride. Love that they have the second ride on to join him! P

B loves when his siblings join him for a ride. Love that they have the second ride on to join him! P

Finally, a good day! Celebrating all the things! Almost to summer break, beautiful weather, NO seizu

Finally, a good day! Celebrating all the things! Almost to summer break, beautiful weather, NO seizu

There’s certain times where I mourn the life I had hoped for my son. I didn’t expect puberty to

There’s certain times where I mourn the life I had hoped for my son. I didn’t expect puberty to

Replying to @ween06969 sometimes we just got to dance to the beat of our own drum 😄 #happy #dance

Replying to @ween06969 sometimes we just got to dance to the beat of our own drum 😄 #happy #dance

Replying to @julius.kaltner_4 you never know what’s to come in your future. The challenges we face

Replying to @julius.kaltner_4 you never know what’s to come in your future. The challenges we face

It’s the first day of Dravet Syndrome Awareness Month and we are already $200 into our 500$ goal f

It’s the first day of Dravet Syndrome Awareness Month and we are already $200 into our 500$ goal f

B is so ready for summer at his grandmother’s house. He knows it’s almost here and has been aski

B is so ready for summer at his grandmother’s house. He knows it’s almost here and has been aski

Happy Memorial Weekend. We will likely be outside this entire weekend as always! #onthisday #fyp #ro

Happy Memorial Weekend. We will likely be outside this entire weekend as always! #onthisday #fyp #ro

I know I’m reaching here, but any brands looking to make a donation on a Friday afternoon? My son

I know I’m reaching here, but any brands looking to make a donation on a Friday afternoon? My son

The judgement as B gets older is always so much more than when he was younger. Many do not realize t

The judgement as B gets older is always so much more than when he was younger. Many do not realize t

We seem to just be at a standstill for B’s seizures right now as we await the gene therapy trial w

We seem to just be at a standstill for B’s seizures right now as we await the gene therapy trial w

Replying to @saints504985 because it’s Friday and B’s happy days are always my favorite too sinc

Replying to @saints504985 because it’s Friday and B’s happy days are always my favorite too sinc

Last year B was doing better with his seizures than this year. B had 2 seizures this weekend making

Last year B was doing better with his seizures than this year. B had 2 seizures this weekend making

Just another day at our house. I like to show B’s seizure free moments, which is why I named our p

Just another day at our house. I like to show B’s seizure free moments, which is why I named our p

Today as I was driving down the road, this song came on the radio. Do you ever have a song that just

Today as I was driving down the road, this song came on the radio. Do you ever have a song that just

How I’ve been driving around all day. I guess he really likes this one 🤣 #boardgames #ride #fyp

How I’ve been driving around all day. I guess he really likes this one 🤣 #boardgames #ride #fyp

I like showing B’s seizure free, happy moments and was excited to make a post tonight as he finish

I like showing B’s seizure free, happy moments and was excited to make a post tonight as he finish

Replying to @candierains B’s eating has always been an issue. He goes through phases where he will

Replying to @candierains B’s eating has always been an issue. He goes through phases where he will

Replying to @brandonbernardin (this was in my drafts but perfect to share after some of the comments

Replying to @brandonbernardin (this was in my drafts but perfect to share after some of the comments

It’s been a week. This trial needs to get moving. Thank you to all our supporters for the prayers

It’s been a week. This trial needs to get moving. Thank you to all our supporters for the prayers

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