My Letter to Oprah
Even though I know She is on vacation, I wrote to Oprah yesterday in hopes that she would do a show about (raising a child with) Epilepsy.
Here's my letter, keep in mind my penchant for over-talking. I get a little wordy and I had to cut it down from 6,200 characters to 2,000 characters. That was hard because you all know how much I have to say.
Epilepsy is life changing for all involved.
Can you please do a show about Epilepsy and how it affects the quality of a person's life? How sometimes the seizures themselves aren't what are so dangerous but how the falls and consequences from having a seizure is what kills. How difficult it is to raise a child with epilepsy when anti-seizure medications do not work and the child is not a candidate for brain surgery.
Epilepsy takes lives, not only in the form of dying, but by robbing people of their independence, dignity and ability to become fully-functional. Epilepsy is crippling even though the person affected might be able to walk.
I have a 3 year old little boy with severe epilepsy (and autism) and am living in a state of constant fear and hopelessness. He is having 60+ seizures a day and cannot be put down. He cannot run, play, or attend preschool. The seizures have greatly affected his cognitive learning ability. He doesn't understand what is happening to him and either do I. He has to wear a helmet and might soon be confined to a wheel chair. The irony is without being able to use his arms and legs, he is losing all muscle tone, coordination, balance and strength in his body. Seizures are now not just affecting his brain, they have immobilized a once happy and healthy toddler.
We have been to two of the top hospitals in the Nation, Stanford and UCSF and we are still without answers as to why or how to help him. He has been on seven different anti-seizure medications since February of this year, sometimes multiple medications at once...up to FOUR at a time. The side effects from the medication is almost worse than the seizures. The seizures have taken over his body and brain. The more seizures a person has determines how many they will continue to have. The brain has a way of multiplying them if they are not under control. It is amazing to me that we really know so little about this devastating disease.
To see photos of my little epileptic or read our story about raising a child with epilepsy please visit my blog: http://doodle--bug.blogspot.com/