Agony, Hope & Resolve

This is an excerpt from an article written by Susan Axelrod, originally published in Newsweek:

"Twenty-three mind-numbing medications. Brain stimulation. Special diets. Countless hospitalizations, emergency-room visits and procedures. Drug-induced comas to temporarily halt relentless, brain-damaging and life-threatening clusters of seizures. This describes the first 18 years of my daughter's life. One night, when she was just 7 months old, I put Lauren to sleep in her crib. The next morning I found her blue and limp—the result, I was soon to discover, of a night filled with seizures. Seizures that defied explanation, resisted treatments and have defined her life ever since. All I wanted, from that day on, was to be able to make the seizures stop. But that goal remained elusive. She could have 25 or more seizures a day. She would wake up after a seizure just long enough to feel the next one coming on and scream out in terror, begging me, "Mommy … NO … make it stop…" I never could. As all parents know, your child looks to you to explain the world, help put things in order and to make things better. There is nothing worse than seeing that look of terror in your child's eyes when you are completely helpless to make things better. When she was 15, Lauren underwent a seven-hour neurosurgical procedure, which, at the time, was our last hope. Surgeons bored holes in her skull and implanted electrodes directly onto the surface of her brain in an attempt to pinpoint the area responsible for the seizures, in hopes of being able to surgically remove it.

When we learned that we had subjected her to this horrific procedure only to come up empty-handed once again, it was the lowest moment of my life. Any remaining hope that we could ever stop the torrents of seizures and the brain damage they were causing dissolved. After 24 hours, my tears gave way to a new resolve. It was no longer OK to sit back and accept that answers could not be found."

For the full article please got to Agony, Hope & Resolve