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Updates

18th March 2010

I continue  my journey to try and create as much awareness as I can about this terrible,
seizure disorder called Dravet Syndrome.

Over the past two years since creating this website, I have met many wonderful people,
many other Dravet families OR should I say ....my Dravet family is growing bigger and
bigger with each day. This wonderful Dravet family is spread all around the world.

I have also received many comments and emails from people looking at the website who are
asking for support or just wanting to know more about this syndrome. I have emailed
every one of these people, again these people are from all around the world.
I truly understand what these people are going through. The best thing now is just to know
you are not alone and that there is help and support out there.
We need to reach out, spread our wings and support each other as much as we can.

Dravet Syndrome is rare, and there is not alot known about it, or about its long term
prognosis and the life expectancy.

I hope and pray each day that through creating more awareness, and through current
research being done, that a CURE will be found one day , soon.

I would also just like to thank the wonderful person who has offered to dedicate his time in
helping me put this website together. Thank you Frank Merlino for all the hard work
you do, and all those late nights ,in helping me to get this website done and looking as nice asit does. You have a very kind heart and we appreciate all that you do. Thank you so much

 

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Last Update 4 October, 2012 12:17