One year ago today, Alek and I sat in the hospital surrounded by a team of doctors who bowed their heads and told us that Mila had a fatal disease and there was nothing we could do. After a long week of tests, they had narrowed down the cause to two terrible diseases, one of which was Batten, but were waiting on the genetic test results. I wanted to scoop Mila up and run away from that place and make everything better. But I felt as if I were tied to the chair with steel cables and had tape over my mouth - forced to watch my little girl lose her personality and die before my eyes. Unable to do anything to save her.
One week later, the test results came back confirming Batten Disease. I remember the deep wrenching pain in my gut. And then I remember a sense of relief that twisted into guilt. For two and half years, I had no idea what was happening to Mila. Doctors had referred to autism, special needs, cerebral palsy, traumatic brain injury, but none quite fit what they saw. The anxiety, worry and sleepless nights ripped me away from real life, from being a present mother to Mila and baby Azlan, from being an engaged wife. I read books and articles on the brain, spoke with parents of children with various syndromes, dragged Mila to doctors and therapists… all with no answer to the changes we were seeing. I carried around a scrap piece of paper on which I had scribbled “neurological symptoms?”. Below I listed “walking”, “talking”, “vision”, “motor skills” with examples of difficulties below each. I brought that piece of paper around with me to appointments for two years, adding to it as new symptoms showed up.
I felt like I was running a marathon, but no finish line was in sight. I kept running every day and every night for months, for years, barely able to pick up my feet and keep my legs moving. I felt lost, yet I knew I couldn’t stop. I took every road and back alley but to no avail. When we received the diagnosis of Batten Disease, I finally crossed the finish line - an unusual sense of relief that perhaps only a parent of a child with an unknown problem can appreciate.
I barely had time to feel that relief before I started on my next marathon, one that I am still running. Once I knew there was a genetic cause to what was happening to Mila, I felt there had to be a solution. It was clear that scientists were on the brink of stopping genetic diseases. I wasn’t sure it would be in time for Mila, but I had to give her the very best shot. I once again turned to articles, scientists and parent advocates across many neurological diseases. I asked questions. And more questions. Each little piece of information led me to another. And now, just one year later, Mila has hope.
I remain cautious. Today may seem to bring us one step closer to a treatment, but tomorrow may seem to push us farther away. The possible treatment we await is new and complex, and the team of incredible scientists is moving faster than light. But there’s no room for normal setbacks as Mila’s seizures increase in number and intensity, and her laughter starts to fade.
But I remain optimistic as well. Where there once was darkness, there now is light. When Mila opens her eyes in the morning and says “mamma”, I kiss her warm neck and she smiles. Hope is what keeps us fighting.
- Julia, Mila's mommy