What a dream come true! Sofie’s Journey awarded our family a scholarship to attend Epilepsy Awareness Day at Disneyland (EADDL) this year.
We have talked about going for years now, but the thought of taking Zachary, our child with Dravet syndrome, to Disneyland gave me immediate anxiety. But after the last 2 years of him asking almost daily when he was going to get to go to Mickey’s House and get to meet Mickey I knew I needed to find a way to make it happen.
We never realized how amazing the expo was going to be. With the expo focused on the entire epilepsy community, I didn’t think much would apply to us — but wow, was I wrong. We met other Dravet families, but also talked with vendors, doctors, and pharmaceutical companies. We came home with a wealth of information and a bag of “treasures” Zachary enjoyed collecting.
Then there was a magical day at Disneyland to end it all! Imagine a Dravet gathering with a day at Disneyland to top it off. Seeing all of the purple shirts spread throughout the park was amazing. Epilepsy warriors and their families are the best. Just knowing there were so many who understood gave us the courage to tackle Disneyland and allow Zachary to enjoy to his fullest because we knew if the dreaded happened – and he had a seizure – we were surrounded by others that would step in and help.
It was the most amazing trip of educating ourselves and seeing the true joy in our child’s eyes. It wouldn’t have been possible for our family without the generous scholarship provided by Sofie’s Journey. We are so grateful to this nonprofit for offering this opportunity to the Dravet community and in turn making this dream come true for us.
Thank you Sofie’s Journey!
-The Maxey Family
