Mila's WAVE


Sometimes I wonder what Mila would be passionate about if Batten Disease wasn’t forcing her to concentrate every ounce of her amazing energy on surviving. I have been lucky enough to be part of her every day, to see the fire in her eyes, and experience her excitement for life. Mila used to sing the words to "Rudolph the Red-Nosed Reindeer" at the top of her lungs, year round, while flipping her hips side to side. She would gobble up an entire pizza and with a full mouth ask if I would share mine. She would run to the edge of the pool and jump in with no idea how to swim. I remember when Alek and I first took Mila skiing at 2 years old. We buckled her into her little boots, snapped on the skis, and stuck her at the top of a barely noticeable bunny hill. With almost no slope to help her move, she looked through her goggles at us with an expression of, “What am I doing here?” Then she stared up at the mountain towering above us, and we knew where she wanted to go. We shrugged our shoulders and jumped on the lift to the top. She laughed out loud in excitement as she zoomed down the mountain taking turns between Alek’s legs and then mine. Up and down we went. Mila couldn’t get enough of skiing, of life.


The next winter was her peak. She graduated to a ski leash and was fearless as we yelled out “look at the trees” and she turned to the right, “look at the lift” and she turned to the left. “Pizza!” and she tried to stop. Mila was catching on, growing up. But the next winter when she was 4, she started to get scared. In retrospect, I realize that her vision was probably starting to go. And her sound processing was probably on hyper drive to compensate. She was easily startled and easily fatigued. We didn’t take Mila up to the mountain much that year, and we started to worry.

Mila never went skiing the following winter when she was 5. It just seemed too much for her. By that point, my concern had turned to anxiety—an unknown we couldn’t pinpoint and neither could any doctor. Over the past two years, I’ve painfully watched Mila slowly revert back in time towards infancy. She had been bounding up and down our staircase. But I had to start holding her hand, then having her crawl, and eventually picking her up at times to carry her down. She used to jump like an agile frog from the couch to the table and back, but she started to trip, to fall, to bump into chairs and tables. She started collecting bruises and black eyes. Mila had mastered using her fork and spoon, receiving applause as she twisted up her spaghetti Italian style. But she started dropping her fork and using her hands. She choked so we cut her food into small pieces, and now we often revert to the blender to make sure she gets enough nutrition.


It seems like just yesterday I was buying puzzles and word games. But I slowly gravitated toward simpler toys, little figurines and dolls. And now that Mila has lost her vision, we stick to tactile toys and rattles—the same toys I would have bought her when she was a baby. Last summer, she was wearing underpants with ponies on them. Now she’s back in pull-up diapers. She used to hike with Alek for hours on end and belt out the words to her favorite songs. But those songs slowly disappeared from our life, Mila became quieter and now she mutters just a few words she can conjure up like “Mommy.”


But our saving grace has been seeing Mila’s character, her laughter and smiles shine through despite her losing her abilities. It astonishes us every day that a child faced with such difficulties can be so happy and still love life so much. We’ve started bringing up memories from when Mila was little to the kids and reminding her of fun experiences or things that she used to do. I often have to fight off the tears when I retell the wild adventures of Mila bug. But it also feels good not to force them away anymore. And each time I get to the point where something funny use to make Mila laugh, she lights up and remembers it and giggles uncontrollably. This gives me such HOPE! Mila is still with us, and she's so strong.  

But we know her light will soon fade if she doesn’t get a treatment to stop this horrible Batten Disease. It seems unreal to me that my growing, advancing little girl hit her peak at just 4 years old. Her wave rose up and up … and now it’s falling back down. People casually throw out that “life is unfair.” But these three little words don’t do justice to what my sweet Mila has had to endure. What our family has had to experience by her side. Every day, I force myself to lift my head and look to the sky and tell myself that there IS hope for Mila, and I’m doing everything I can to give her the best chance possible at life.

-Julia, Mila's mommy