I created this video yesterday in recognition of Purple Day, a grassroots effort to increase epilepsy awareness worldwide.
Those who have experience with a seizure disorder like Danielle's know that this is a tiny part of our story. Trialing drugs is like a guessing game. Research is so badly needed. There are children struggling with a catastrophic seizure disorder that threatens to rob them of everything. New research could release them of the clutches of a beast. We dont know yet how Danielle's story ends, but I pray for her everday, as well as everyone else that has struggled with epilepsy.
It it's been laid on your heart to get involved, here are some ways that you can help.
http://www.cureepilepsy.org/getinvolved/
Please watch.
Thank you for sharing beautiful Danielle's story. My 5 month old son, Eli, just got diagnosed with Infantile Spasms yesterday (he also has Down syndrome). Luckily we caught it very early. He checks in to the hospital to start receiving ACTH on Friday. I hate knowing what to expect (losing my baby for a bit, missing his smile) but I am ready. It is nice to know we aren't alone. It is most definitely a beast.
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