Ainsley at 11
I’ve written to you in the past to share our family’s story of how your generous support for the MAB-Mackay helped give our daughter Ainsley a brighter future.
It’s been four years since my last letter to you, when Ainsley was seven.
Let me give you a bit of history. Ainsley was born in 2005. It was a wonderful time for my husband and me, the new parents of a beautiful baby girl. It quickly became clear that Ainsley’s development was slow, and we decided to have her tested. For two heart-wrenching years, we went through an exhaustive number of tests and scenarios with many doctors, facing realities that no parent should ever have to face. Some even told us that we’d be lucky if Ainsley lived past the age of five.
Ultimately, we received a complicated diagnosis of cerebral cortex dysplasia, combined with a long list of other problems. What did this mean for Ainsley? It meant she has damage to the brain causing muscular difficulties on the left side of her body, deafness in her right ear, a sensory processing and speech disorder, epilepsy, as well as a variety of food intolerances.
In the months and years that followed, the wonderful team at the MAB-Mackay helped to unlock a new world for Ainsley. It took months to program her brain and muscles to recognize sounds and reproduce them. The therapists supported her through the development of so many other skills that allowed her to be independent, and to participate in many activities we all hope for our children. She could not have achieved any of this without your vital support of the MAB-Mackay Foundation.
In spite of many daily challenges, her situation seemed to be stabilizing. She was in a mainstream elementary school with regular children, and was active in many after-school activities including swimming, skating, and dance. Our family was settling into our routine, and our visits to the MAB-Mackay were fewer.
But things took a dramatic turn in the fall of 2014, as Ainsley was preparing to enter grade 4. Ainsley’s seizures returned, more frequently and powerful, leaving us feeling helpless. We had worked so hard for so many years, and it felt like we were right back at the beginning again.
While the surgery saved Ainsley’s life, it left her paralyzed on one side and took away her left vision field. This is what brought us back again to the MAB-Mackay, our “home away from home.”
Imagine what it was like for Ainsley, her brain always wide awake and constantly firing off messages. For years, she never even really slept or rested. This hyper-activity caused severe epileptic episodes, resulting in multiple trips to the ER in the ambulance, and prompted a whole new set of tests.
The doctors ultimately recommended Ainsley undergo a hemispherectomy, a complex 15-hour surgery to disconnect half of her brain. Nothing can prepare you as a parent to deal with something like this, to have to explain to your child that they need such a big operation, to promise them that their life will be better afterwards.
In the months that followed the surgery, our family of therapists from the MAB-Mackay worked tirelessly with Ainsley, retraining her brain to learn how to do everything again – from moving her arm and leg on her left side, to sitting, standing and walking. After years on this emotional roller coaster, their support and guidance have been our rock. No parent wants to imagine their child going through what our little fighter Ainsley has had to face in her life.
Currently, Ainsley is receiving care and training for her coordination challenges, her hearing difficulties, and her visual impairment. Her hard work is paying off, and she’s come so far! She’s learned to dress herself again – one among the many everyday tasks she’s mastered in recent months that we take for granted. Her pride and desire for independence is amazing. As a parent, we are so excited for Ainsley and all the new possibilities that will come her way.
Ainsley will continue to need the MAB-Mackay into the future, to provide assistance as she grows and matures into a teenager and beyond. None of this would be possible without you!
-Jocelyn, proud mom of Ainsley