It's kind of crazy how quickly your life can change in a such a short time. In 2008, we entered the new year feeling positive and optimistic. Our 4 year old had received a tentative diagnosis of PDD-NOS and her seizures were finally under control. The rest of the kids were healthy and we felt certain that the worst was finally behind us. We had no idea of the events that were to unfold.
Tatyanna was born at home on February 28, 2003. Other than weighing a very surprising 9 1/2 lbs there was nothing about that day that would prepare us for what was to come. Tatyanna was an extremely active little girl and justly earned the nickname of "Stitch" in reference to the loveable but destructive alien from Lilo & Stitch. Except for having a speech delay, she met all of her childhood milestones early. By the age of 2 she could scale cupboards and was always the first kid at the top of the climbing structures at the local parks. She could run for hours and I used to find myself wishing that I could bottle that energy so that I could use it after a long day of chasing her around!
It wasn't until April 2007 that we became concerned that something was wrong. Tatyanna had started to become increasingly clumsy and would frequently trip and fall. After having an EEG, it was determined she was actually having seizures. Although we weren't thrilled with this diagnosis, we weren't too concerned either. After all, we knew people with epilepsy and they were able to manage their symptoms quite successfully.
During that summer, Tatyanna's seizure activity increased in both severity and type and we struggled to find the right medications and a proper diagnosis. We noticed that she was starting to have difficulty finding the right words and then getting those words out. She also developed problems with her balance and co-ordination and our once active child was barely able to stand up without falling over. While many of these symptoms could be associate with the medications that she was taking, we knew deep down that something was very wrong. We began to push for more testing and a referral to a pediatric neurologist. In December, the MRI results came in as normal, baffling everyone involved. We breathed a sigh of relief and began to enjoy the Christmas season. Tatyanna was on a new medication and the seizures seemed to be under control.
In mid January, our vacation came to an abrupt end. The seizures were back with a vengeance and our daughter was once again stuck to her kid-sized recliner in the living room. It wasn't until this point that we were able to meet with a pediatric neurologist at the Children’s Hospital in Winnipeg. Assessments were done, blood was drawn and previous tests were reviewed. We were then informed that the MRI was not normal and that it was possible that Tatyanna suffered from some sort of progressive myoclonic epilepsy. It was a very long 3 weeks while we waited for those lab tests! When we got the call to come back to the Children's Hosptial for a conference—without kids, we knew it was bad. Despite that premonition, nothing can prepare you to hear that your child will not get to grow up. On February 19 2008, we were told that Tatyanna had LINCL. We were devastated. Here we had this beautiful 4-year-old daughter who loved to snuggle while watching classic Disney movies and was crazy about horses and we were told to take her home, contact Westman Dreams for Kids and wait for her to die. This was not acceptable and we immediately went home and prepared for battle.
After doing hours of research and sending enough emails that our fingers would cramp up, we decided to take a chance and bring her to a neurological centre in Beijing for treatment. We knew it wasn't a cure but were hopeful that it would at the very least slow down the ravages of a disease that was quickly taking our daughter away. Going to China for something that could really be described as experimental at best was not a decision that we made lightly, but for us, it was the right decision and we have no regrets.
February 19, 2011 will be the three year anniversary of our life-changing journey as parents to a child with Batten Disease. In that span we have learned to become advocates and researchers. We have travelled to places we never anticipated and gotten involved with amazing organizations like Children's Wish Foundation. We have learned to appreciate the small things and to live in the moment. Family has taken on a new level of importance and we strive to make each day as meaningful as possible. Some days are good, some notsomuch. But for the moment, Tatyanna is still smiling and still laughing and some days that's really all that matters.
-Trenton and Janelle Zazalak