Ainsley’s New Life
Every parent hopes for a healthy and happy child. Well, we didn’t get the healthy part.
Ainsley was 11 months old when pediatricians noticed she wasn’t hitting milestones. She was diagnosed with a brain abnormality on the right side.
One night, when Ainsley was 5, I fell asleep with her on her bed. I heard this gurgling, choking sound that woke me up worried.
It took me a good 10 seconds to realize Ainsley was having a seizure. Let me tell you: panic sweeps over you. You feel totally helpless.
We went to The Children’s ER where they gave Ainsley anti-seizure medication. Eight months later, Ainsley had her second seizure. It scared me even more: how could this be? She was on medication! From then on, she took different medications, and yet would keep having seizures. Will this ever end?
Dr. Elisabeth Simard-Tremblay asked us to stay at the hospital so they could monitor a seizure. That’s when they realized she was having seizures more than anyone knew. She was having silent seizures. “Every time she has a seizure, it damages the good side of her brain,” Dr. Simard-Tremblay told us. “It’s killing her from the inside.”
Thanks to your support in giving us access to sophisticated investigative tools and sought-after expertise, we were offered a radical procedure.
Dr. Simard-Tremblay and Dr. Jean-Pierre Farmer, The Children’s Surgeon in-Chief, opened a door that was filled with hope. They said it was possible to cure Ainsley’s seizures. To do so, they’d have to perform a hemispherectomy – meaning disconnect half of her brain.
As you can imagine, this was the hardest decision Ainsley's dad and I would ever make. We were choosing to paralyze her on one side and would have to live with the consequences.
“Will I still be me when I wake up?” Ainsley then asked. She was only 9, yet old enough to understand the seriousness of the surgery.
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.
Admittedly, it was tough to sign the legal paperwork and the Do Not Resuscitate release. For entire 15-hour operation I kept thinking: My baby is in their hands, and their hands are in her head!
By “losing” half her brain, Ainsley had to re-learn all her motor skills. She lost half of her eyesight. But for us, half is more! She hasn’t had a seizure since surgery and we’re reducing the number of medications she has to take. Before, I couldn’t just talk with Ainsley about everyday life. She can walk, she has friends, she’s learning to read and most importantly, she’s happy.
Since her life-changing surgery, The Children’s continues to be a big part of Ainsley’s life. And you will always be a part of hers. We’re a living example of how your donation gives sick children the same opportunities as others to reach their full potential. Please renew your support and allow our daughter and other children to thrive.
My sincerest thanks,
P.S. Having to make the decision to have half of our daughter’s brain disconnected was fraught with doubt and fear. Today, our Ainsley has a real opportunity at life. Thank you for renewing your donation.