In this Community Spotlight meet Elizabeth and her twin sister, Madison. Elizabeth wrote us this really sweet letter and we just had to share it with our community!
To begin, I would like to thank you for all the hard work you do. From holding conventions to zoom meetings, your tremendous effort shines through and makes a difference. Thank you for educating people and families on what Dravet syndrome is, and thank you for helping those families.
My twin sister, Madison was diagnosed with Dravet syndrome about five years ago after being misdiagnosed multiple times. Since finding out she has Dravet syndrome, it was a difficult transition to accepting the fact that there is no cure to her illness. My family treasures the small victories and the little moments, and another thing that gives us hope is this foundation. This foundation strives to help families, and fund research towards a cure that will continue to help those diagnosed with Dravet syndrome.
My parents and I had a discussion about a new idea for my allowance. Every week, my dad would save a portion of my allowance and set it aside for a charity that I would donate to at the end of the year. Immediately, I thought of Dravet Syndrome Foundation as on the top charities on my list.
About four years ago, I had the amazing opportunity to go to one of the Dravet conferences in Miami. I got to meet other children my age who were going through the same things, and feeling the same things.
Over the years, this foundation has helped my family in so many ways, it’s quite hard to describe. So, I would like to thank you again for everything you have done for me and my family.
From the entire Dravet community, thank you Elizabeth for your generous donation. Madison has one amazing sister!