I would LOVE for everyone to go check out the new Doose website! It is updated and gorgeous!
Jake's story is on there, as well as several other kiddos who are fighting the beast with him.
What's amazing about this site and Doose/Epilepsy awareness, to me, is that when I was searching for ANY sort of information on Myoclonic Asatic Epilepsy, aka Doose, just 3 years ago, there was nothing to be found. What we did find was not encouraging news at all. We would have rather not read any of it.
The prognosis was always very bad: mental retardation, possible death, lifelong seizures, learning disabilities etc, etc.
I am quite certain that even Dr. H had his hands full with Jake and his case. I vividly remember the look in his eyes...the look of compassion and yearning to help our baby boy, but not knowing exactly how to do it. I think in some sort way Jake was a little Guinea pig, a learning tool. They, the Dr.s, were learning, just as we were also learning.
The difference between Dr,.H and the other neuros, is that he tried!
He tried to save our little guy and bring him back to us.
We left one neuro after a week hospital stay and the parting words were "we don't know, he is a hard case." and the other; we were fired from!
Dr. H and the Cook neuro team fought this battle for us and even let us drive with them through it, instead of insisting we do things "their" way.
Over the years, this unawareness and these questions are changing to ones of more certainity.
Changing thanks to awareness!
Thank you all for all you do in helping to raise awareness for this horrible disease. The more we talk about it, and the more we share, the more everyone will become aware and try to fight the fight with these precious kiddos!
What can you do to spread the word?
Awareness without action is worthless.
Friday Fellowship - Jenna Buettemeyer
23 hours ago