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Julianna Hope


Julianna had an uneventful first four months of life and then our world was broken apart when she had her first series of infantile spasms. Then began the endless, gut-wrenching journey to find anything that would stop the relentless devastation of her seizures. They turned a happy, round faced baby girl into a a limp rag doll that was either seizing or sleeping.
We traveled far and wide to try to find a cure or medication to control her daily seizures. The diagnosis and the worst news of our life came two blocks from our home, Aicardi Syndrome, unheard of, unknown, and unwelcome. Fast forward to finding a medication that worked and worked well for years. We were extremely fortunate to have such a great response.

But like most things that are too good to be true, in March of 2011 she had a devastating fall at school that caused her to become traumatically brain injured and the seizures came back full force and this time nothing on earth has controlled them.
So we have begun the journey again this time to see if she is a candidate for brain surgery, something I would have never, ever considered previously. We have to take several trips up North from Florida to have extensive testing done. The initial results look promising but of course we need solid, concrete information.
Please keep our girl and all of the Aicardi girls and their amazing, unrelenting warrior parents, in your thoughts and prayers.

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11-09-2012