Monday, March 26, 2012

Turn the World Purple TODAY for Epilepsy

HAPPY WORLD EPILEPSY DAY!!!! We are wearing Purple today for Epilepsy!

What are YOU wearing?!?!?

If you are wearing Purple for Epilepsy, please send us a picture to include in an album for our family, showing the many faces of support this Purple Day! Even if you don't have any purple clothes, find a hat, a ribbon or even make a sign to hold up ;-) we want your picture. Please, if you are so inspired - include a message, poem or prayer for Destiny, our family, or about your experience with epilepsy!

I have shed many tears since last May, when my Love received the definitive Dravet Syndrome diagnosis. We had experienced seizures for years prior. It was actually my son, Benny, who had the first febrile seizure. I remember that night like it was 2 minutes ago.

Destiny's first seizure was different...singing and dancing around, preparing to bathe one moment, and on the ground convulsing the next...My baby...This was my fever or sickness detected but the ER was certain the fever had to be somewhere...And again....And again...Word had it that Destiny had febrile seizures and also that she was having problems staring, chewing, walking straight, and waking in unconsolable and unresponsive 30–40minute screams because she had a "flakey" personality.

It was the picture-perfect evening in late June/early July of 2010 that led us on the path of no return. A fever was obviously not a trigger. Excitement was!! And temparure!We were eating dinner at a kids play water fountain...Destiny was running in and out of the shooting water laughing, thrilled, with one to two dozen other kids...and suddenly, our world stopped..."Save my baby!" I screamed at the cops and EMT's repeatedly as they gave her oxygen and tried to get history. Close friends met us at the ER for support and to care for my frightened boy, almost weekly after that, for awhile.

I remember her first Anti-Epileptic med, and the neurologist's words, "I strongly recommend you put her on this. It's not going to go away for now.". That was the beginning. Destiny was diagnosed with refractory epilepsy months before last World Epilepsy Day 2011, her genetic test for Dravet Syndrome was being processed, but still, in general, every professional gave me the impression she could still "grow out of it" or get it under controlled.

By April, the thought was she had another devastating epilepsy disorder called LGS - the severity and regression were alarming. In May, genetics confirmed Dravet Spectrum Syndrome (since then, 'Spectrum' has been dropped...)

The same neurologist who saw her for the very first time way back, happens to be the 'Dravet doc" and, well, here we longer do we go to the ER until breathing is compromised...I am the 'expert' and make judgement calls all the time about when and how many times to 'rescue' per bad night, when sleep is sleep or non-convulsive status, who to entrust with her care, what risks are worth taking, when to wear the helmet, all the way down to what treatments to try next and how much of the truth my son needs to know when. I no longer scream "CALL 9-1-1 NOW" or even think doctors can help...I'm much more interested in their machines when we do go in ;-) This is Life as a parent of a child with a rare, unknown by most, life-threatening conditions.

I will be affected by epilepsy for the rest of my life, Benny and Destiny, too, as well as our loved ones, in one brutal way or another, for the rest of our lives. This Epilepsy Day, I celebrate my daughter, her resilience, her strength, her innate beauty inside and out: My heart goes out to our friends with uncontrollable seizures, and I weep for the families whose Angels have grown wings way too soon. I ask for compassion as I beg for a cure!!

- Posted using BlogPress from my iPad

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