Every parent hopes for a healthy, happy child. Well, we didn’t get the healthy part.
Ainsley was 11 months old when her pediatrician noticed she wasn’t hitting developmental milestones. Doctors at the Children’s started to investigate. Though our little girl was diagnosed with a brain abnormality, we celebrated the fact that they had ruled out various fatal neurodegenerative diseases!
When Ainsley was 5, I fell asleep on her bed. A gurgling, choking sound woke me. I realized Ainsley was having a seizure. Panic swept over me.
At the Children’s ER, doctors prescribed anti-seizure medication. Eight months later, she seized again. But how? She was on medication! She was prescribed a second medication, but the seizures continued.
Dr. Elisabeth Simard-Tremblay began monitoring Ainsley. That’s when we learned the seizures were happening far more often than we realized. “Every time she seizes, it damages the good side of her brain,” she explained. The seizures were killing her from the inside.
We felt helpless…
In March, 2015, Dr. Simard-Tremblay and Dr. Jean-Pierre Farmer, the Children’s Surgeon-in-Chief, offered us a ray of hope. There was a cure. But, they’d have to perform a hemispherectomy – meaning disconnect half of Ainsley’s brain.
It was the hardest decision my husband Corbett and I would ever make. In essence, we were agreeing to partially paralyze our daughter with no guarantee she’d regain mobility. “Will I still be me when I wake up?” Ainsley asked. She was only 9, but she understood the seriousness of the operation.
In the end, the decision was clear: we had amazing doctors who were all in favor of this procedure and a top surgeon to operate on her. Our child was suffering, and we could change that.
Signing the legal papers and “Do Not Resuscitate” release was tough. The operation lasted 15 hours. The wait was excruciating. I kept thinking, my baby is in their hands, and their hands are in her head!
By losing the use of half of her brain, Ainsley had to re-learn all her motor skills. She is also blind in one eye. But she is seizure free! After school each day, Ainsley happily tells me what she’s learned. She’s also an awesome big sister. I worry about the future and what challenges lie ahead. But right now, Ainsley is carefree. She has lots of friends, and most importantly, she’s happy.
Thanks to you, my daughter has the opportunity to reach her full potential. Please renew your support so children like Ainsley can thrive.
My sincerest thanks,