The Dravet Syndrome Foundation posted a little story about our fundraiser on their website here: http://www.dravetfoundation.org/archives/4370
Last Call for Little Luella Shirts
I will mention one last time that a final order for Little Luella shirts will be going in on Friday of this week (July 11th). Right now we have an additional 50 shirts to order!! We are so overwhelmed by the support we have received for these shirts!! We'll have about 180 people wearing these shirts when we are done!! What a GREAT way to raise awareness for Dravet Syndrome and show support for Luella!!! The price for the shirts will be $13 or LESS at this point. Once again, I'm happy to mail shirts to people not local. Read more details about the shirts on my last post here - http://littleluella.blogspot.com/2014/06/still-want-little-luella-shirt-new-order.html
Luella Update
Luella has been doing about the same. She is still averaging about a seizure every week. We added a new medication and are gradually increasing the dose. We are hopeful that it will help her go even longer between seizures.
Many have asked about the status of the medical marijuana for Luella. In case you missed previous posts - it did pass in Minnesota but unfortunately we have to wait a year or more to get access. July 2015 is when it is scheduled to be available. The state is allowed one six month extension, so at the latest it could be January 2016. While we wish we could have it right now, we are so thankful that it is in the works and we don't have to wait for the next legislative session to present another bill!
Thank you for following us on this journey with Luella - for your support and most importantly your PRAYERS! We serve a mighty God....
“What no eye has seen,
what no ear has heard,
and what no human mind has conceived”
the things God has prepared for those who love him.
1 Corinthians 2:9
Congratulations for the successful fundraiser! I studied a bit about Dravet Syndrome back in college and I know how difficult it is for every family with a child who has one. The foundation has such a great advocacy. I'm with everyone in hoping and praying that a cure be developed soon. I hope Luella is doing fine and that she gets the treatments she needs ASAP! All the best to you!
ReplyDeleteNorman Watkins @ Giving Works