A Seizure Cure is Needed Because.....

Right now a parent is up with their little girl or boy, watching them seize up, and monitoring their vital signs. They are stressed out about their cherished child turning blue from a lack of oxygen, and wondering "could this be the one?" Each day they live with this in their hearts and minds, and it greatly affects their quality of life. Parents of children with seizures have a special connection, that is more powerful than your traditional parent/kiddo relationship, in that they suffer together. If it isn't painful enough for a child to have hundreds of times a day, or have them so bad that their development is negatively affected, imagine their parents. These brave folks, and what they have to contend with every single day. That's right, 24/7, as most of them are sleep deprived, and how they get up every day, is a testament to their strength.

A cure for these parents would be so helpful. They wouldn't be stressed out as much, wouldn't be in and out of sleep on even good nights, worrying that they are not going to be there to insert diastat into their child's bottom to save them. These parents would be even more productive members of society. Each year at the Angelman Walks, I am amazed by how giving parents of children with Angelman Syndrome are, along with other conditions. They don't know the meaning of "quitting," but rather sharing their knowledge and helping out the communities that they reside in, even despite the multitude of challenges that they face every single minute. The same can be said for parents of all special needs children, as they show a resilience that is hard to put a finger on, but rather it is possible to follow by seeing what these folks contend with and still succeed.

If these parents didn't have the pressure of seizures, it would be like that "anvil of weight" described in Arthur Miller's "The Crucible" being taken right off of Giles Cory. There would be much more sleep, even more productivity which is hard to imagine but a beautiful thought, and children affected by seizures would have much happier lives as well. That would be a winning hand, a true grace and respite from so much pain, that so many parents and grandparents, along with siblings are experiencing right now.  These great parents would finally get to sleep peacefully, knowing that their children are fine, and not having to think about the game plan, or perhaps calling 911 or worse. Instead, right now there's parents up across the world. They are stressed because of seizures, and for that reason alone we must do everything in our power, to at least lighten up the load a bit.