"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Friday, May 14, 2021

Did you get a hat?

 

Did you get a Dravet Syndrome hat?



If you got a hat when we did the Hat Fundraiser for DSF a few weeks ago, we’d love to see your pictures. Dravet Syndrome Awareness Day is coming up on June 23 and I’d love to share a photo collage of all those awesome hats out there. 


If you missed out and still want a hat, let me know - I did order a few extra! 

Also, we are super excited to share that Luella is 
650 days seizure free today!!! 

We are so grateful for each and every day enjoyed without a seizure. Luella has many Dravet friends that do not get to experience seizure freedom. Many struggle every day and face so many challenges. Sadly, some don’t make it. We’ve had a few in our Dravet community just recently lose their warriors to this awful battle. We know that Luella’s future is uncertain too. In just over a week I’ll be launching my EIGHTH Annual “a cake 4 a cure” fundraiser. We hope to raise more money to help DSF find a CURE. IN THE PAST 7 years we’ve raised over $10,000 for DSF to fund research for a cure! Be watching for more details!

I’ll leave you with Luella playing “Für Elise” for her virtual spring piano recital. 






Thank you!



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