10 month old Everly & De novo Dravet Syndrome

A big HI to everybody I'm David Wrigley or better known as Wiggles/ Wriggles/Dave /Dad/or the grand kids call me (Pa).

I'm here because my youngest granddaughter of 7 beautiful grandchildren has (DE Novo Dravet Syndrome) (EPILEPSY) What my dearest 10 month old Everly has is not a past down gene but a Mutated Alteration in a gene that happened as a fetes. That's really complicated I know, I'm still learning & trying to understand. Please forgive me if my words aren't right or what I write isn't what you believe to be right (please correct me/ help me understand better). I'm a 52 year old trying to understand and take in this condition (Syndrome) that is for me plain heart-breaking, its way out there.

Everly needs constant supervision. Everly's seizures can be set off by being to hot to cold to happy to sad being startled clapping of hands, even the medication prescribed to help her can set off a seizure.

So i guess as i cant help pay for a lot and Everly needs a lot And in order to help her there are bills fuel food rent you all know the on going costs of life without these predicaments its not easy.