The Trees Who Stand Tall


The other day, I took Mila to her first yoga therapy session. She lit up as we worked to open up her chest, stretch her arms, and suspend her upper body with the help of ropes. I can only imagine how good it felt to bring feeling to areas of her body she wasn't normally using, to relax in positions that gave her organs and muscles a rest. As always, her smile let us know she agreed! 

There’s a tiny studio in town that’s been around forever, which offers restorative yoga, demanding of its teachers years of studying anatomy. In the last few months, a number of friends have mentioned that the teacher there works with children with neuromuscular diseases. So I reached out, and we agreed I should stop by and sit through a session with these children.

I arrived a little early and sat on the curb just outside the door. I noticed out of the corner of my eye a couple moving slowly my way from the parking lot. I looked up only to see that it was a mother perhaps 10 years older than I am right behind her teenage daughter, pushed up against her body to help her move forward. She was holding her hands with a strong, yet loving grasp. They stepped in sync in a way that was so familiar to me. The girl reminded me of Mila with brown hair and bright shiny eyes, but with an open mouth and a seemingly emotionless stare. Her arms were locked in a bent position and her hands were in tight fists. The mother and her daughter stopped right in front of me for a break and the mother looked up at me with a tired, but genuine smile. I felt as if I was looking into my own eyes years down the road—the eyes of a strong, worn out, yet incredibly loving and dedicated mother. I could see the muscles in her arms built up over years of holding her daughter as she could no longer hold herself.


She introduced me to her daughter and said she had heard about Mila. I looked into their eyes and couldn’t hold it in, I didn’t want to. I bowed my head and cried in honesty and pain. At first it came from a place of sadness and fear, that this was my future. But it quickly turned to admiration for this amazing mother, so strong and radiant, her feet standing so firmly on the ground. She looked at me, and tears filled her eyes. She knew my pain and joy, and I knew hers. Her tears seemed to say, “I know what your life is like; I’m sorry. But this life can also bring such joy.” She hobbled behind her daughter through the door of the studio where the teacher’s voice lit up the room in excitement to see her. This girl had been coming for five years now and was welcomed as if coming from her own mother. I was overcome by emotions as I stepped into the room.

Up against the back wall was another mother, her son by her side lying on his back across a raised cushion. She applauded her son, and he smiled back up at her. More tears poured down my face. I was immediately taken aback by how spirited and upbeat she was despite the road she had traveled and the prognosis of her son. She spoke in a tone of pure acceptance and optimism. This was her life, and it was OK.


I didn’t know any details of these mothers' lives, but yet I felt I knew them so well. I knew the sharp turn their lives had taken, the tears they had shed, the strength they had to find in themselves to keep moving forward, and the immense never-ending love they had for their children. I knew the adjustment they eventually made to accept their new norm. And the ups and downs their road had taken them on.

For the next hour I sat cross-legged on the wood floor and watched as these mothers kneeled and bent over and lifted their children to help them into poses. Their encouraging words and love lifted my spirits higher and higher as the time passed. What one might have interpreted as a room full of sadness to me became a room full of radiant energy.


Despite the pain, I walked out of the studio that morning feeling fortunate to be part of this raw and honest side of life—a beauty most people would never know existed. We are parents who must stand tall like trees, whose roots extend from our bodies and wrap around our children’s eyes, their legs, their bodies, and their minds.

- Julia, Mila's Mommy

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


Everyone's Sunshine

Just a few days after Mila was diagnosed with Batten Disease, an old friend put me in touch with a woman she thought I should speak with. This woman had lost her son two decades ago when the young, aspiring photo journalist was killed in a war-stricken area of Africa. Wise well-beyond his age, her son’s mission to expose the pain and fear in this area of the world caught him in the wrong place at the wrong time. Now, his mother strives to keep his spirit alive by encouraging other young activists to communicate their messages through media and art. The story moved me, even at a time when I felt such deep pain about Mila.

The news that Mila had a terminal illness with no cure had just barely begun sinking in when I had this phone call. We spoke for a while, most of which is now a blur, but there was one message she shared with me that shot through my body, made me fold over in pain – less from a place of sadness, more from the realization that she was right. She told me with conviction that Mila has a much bigger purpose in this life than I ever would have imagined. Her gift to me was being my amazingly happy, loving daughter who showed me the joy of every minute of every day. But her gift to the world would be something much larger. In that moment, my throat locked up, the tears filled up in my eyes, I pulled the phone away from my face and cried. I knew she was right. It almost felt like I let go of Mila just then, I gave her up to the world around me. But I quickly pulled her back in. What she said hit me like a bullet. But I wasn’t ready to sacrifice my sweet little girl up for the good of others. It was easy to write this, even as I created our website. But it was excruciatingly painful to believe it.

A number of months have passed since this conversation. The message has come to mind many times since then, but I still could not digest it. I believed that the clinical trial we were starting could stop the disease not just for Mila, but for other children like her. But when I looked myself in the mirror, I was honest with myself. I simply wanted to save Mila’s life.

And then something happened. I woke up early one morning and rolled over slowly to grab my phone as Mila lay sleeping peacefully next to me. I opened my email. A family in Europe with a 7-year-old boy suffering from the same type of Batten as Mila heard about our trial from a doctor. I was caught off guard as I read a long message from the father of this little boy. His son was about Mila’s age and was suffering the devastating affects of Batten - he has lost his vision, his ability to walk, and his ability to talk. And just that day, he and his wife had received the heart wrenching news that their perfectly healthy three year-old son had Batten as well. His pain and desperation shot through my phone, up my arm and into my heart. I could barely breathe. This was his Azlan. His shining light in the darkness. A little boy who climbed over rocks and ran through fields and sang songs. Untouched so far by the horrible disease that has robbed his other son of everything. He begged for hope. He could not go through this again. I knew his every thought. I had lived each of them for months and months as I waited for Azlan’s diagnosis. We were so incredibly fortunate that Azlan was spared. We had found out just a few weeks before. But this family was not as lucky. And I wept in pain for them. I pulled my phone away, lay back on my pillow, and tried to wrap my head around how it was possible to have a deeper pain than what I was experiencing with Mila? How could there be a place below where I was now? How could any family be dealt this amount of pain in one life?


I looked over at Mila, laying quietly on her lilac pillow, her long dark lashes asleep on her face, one hand holding the other. Her inseparable friend, Olaf, lying on her shoulder. My pain for her, for my family, for our life pushed up my throat as I tried to breathe. And then I thought of this family and their little three-year-old. It was the first time that I truly felt what an incredible gift Mila would give the world. I cannot know whether the trial I start will be in time to save Mila’s life. But I do know that because of her, for the first time ever, children facing this terrible terrible disease will have hope for a long, happy life. And this father might be able to grow old with his son.

Mila has touched so many people’s lives over the past six years of her beautiful life. And now her light radiates so much farther than I could ever have imagined. I look at her today and feel in my body that my sweet sunshine, my Mila bug, has an amazing purpose in life. This thought gives me even more strength to keep fighting for her life.

-Julia, Mila's mommy



Being a Mother

Today, I face the joy and the pain of being a mother. This Mother's Day, I ask myself what it truly means to be a mom? A few months ago I might have said to make your children laugh, to teach them what's important in life. But now I answer differently. To make today a happy day - as if there were no tomorrow. To radiate love to your children every day. To give every bit of yourself for the life of your child.  

Today, I've thought about how amazing my own mother is. She has allowed me the space to grow into the person I am, together with the guidance to direct me when I was lost. She encourages me in whatever I do and makes me feel strong and confident. She always gives me hope in even the darkest moments. And most importantly, she has shown me through her actions that her love for me is constant and nothing comes before your child. Nothing. When I have really needed someone, my mom has shown up. Not a month later, not a week later, not even a day later. Right then, when I've needed it most she is there. Always. And the times I've needed someone were often the times that were most inconvenient for her. That's just how it goes. But each time she's managed to put everything aside to be there for me. And the list isn't short.

When I shattered my ankle and went through excruciatingly painful surgeries, she fed me and bathed me for weeks. When my water broke 3 months before my due date she was in Colorado by my side within hours distracting me with stories and giving me reasons to have hope. When I went into labor with both Mila and Azlan, she was there before leaving for the hospital and there to watch my babies come into this world. And when Mila was admitted to the hospital in December, my mom was in the room with us that same day. She stayed for two months to hold together our family and help me put one foot in front of the other, showing Mila and Azlan my love every day. All of this while holding a full-time job and putting her money toward the care we need for Mila.

So when people ask me how I find the courage and energy and drive to put together a clinical trial to save my daughter's life, to attempt to raise millions of dollars in one year and to try my best to be in the moment with my kids - it's because of my mom. 

So thank you, mommy, for instilling in me the love, strength, courage, and hope I never knew I would need to rely on so greatly. 

Julia - Mila and Azlan's mommy, and my mommy's daughter