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