Between Hope’s Edge and a Miracle

 
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On the eve of Mila’s treatment, I am filled with many emotions. I have pushed so hard over the past year to get to this point, that there was little room left to think or feel. Now I am here, sitting on the hardwood floor of our rental house in Boston with my back against the wall. Mila’s treatment is scheduled for 12 hours from now. I hear myself breathing. I feel my chest expanding and collapsing. I look around the room and seem to notice every detail, perhaps because this is the first time I have allowed my eyes to drift in over one year.

Part of me just wants to hit the fast forward button and have Mila’s first treatment behind us. But something pulls me back. Deep down, I know that I am in a sweet spot that I may never be in again. A spot between hope’s edge and a miracle. Tomorrow, Mila will receive an injection of a new medicine that will go directly to her brain. It is experimental, which means it could be that breakthrough treatment that makes the impossible become possible. Or it could be a valiant attempt that just falls short. She could be the pioneer whose life is saved, or the one whose sacrifice helps those that follow.

 
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It’s hard to digest the different paths that Mila’s life could take from tomorrow on. Whenever I’ve found myself facing difficult thoughts, I look up to the sky. It clears my mind and lifts my spirits. So I went on a run in the snow today and looked up. I found myself reaching my arms out wide and asking aloud for Mila’s treatment to offer the best outcome for her, whatever that may be. I asked for the strength to enjoy this beautiful life, no matter what turn it takes. And I asked for help transforming Mila’s story into hope for families like mine crying behind closed doors.

I tell myself that I have done everything I could to give Mila the very best chance at life - though it is much easier to say than accept. I question what stone I have left unturned. But I realize we are fortunate that Mila was diagnosed when she was and not any earlier. Science is getting close to curing devastating genetic diseases like Batten. But genetic treatments are just picking up. We’re paddling into the big wave - it’s rising, we can feel it. After all of the trials I have followed and articles I have read over the past year, I can’t believe that we are actually getting up on our feet and riding that wave. It’s just barely on the rise, but we’re standing.

 
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Leading up to this day, I asked family, friends, and those following Mila’s story around the world to close their eyes and envision Mila healing. Since then, I have received beautiful messages of dreams and visions that people have had. A friend I met the month Mila was born, sent me an email that moved my body and my soul, and I will treasure it forever. As I sit on the floor, I pull it up to reread:

Dear Julia, I closed my eyes and I saw Mila, who had just been born, in the coffee shop in Boulder where my husband and I met your family for the first time. I saw Mila in Boston overcoming the difficulties of this new revolutionary genetic therapy. I saw Mila grow up and, as an adult, talk about her story in public. Like that, in just a few emotional seconds, I saw her life. I tried to tell her that I love her and assure her that her future is possible.

My eyes squeezed shut as hot tears poured down my face. Through the tears, I saw Mila’s rainbow shirt lying in a pile by the wall. Before putting Mila down to sleep tonight, I took a bath with her. I sat behind her in the tiny old tub and washed her body and her hair. I sang her the soothing melody Dona Nobis Pacem, the song I used to sing to her as a baby, and one my mom sang to me. In Latin, it means “Grant us peace”. It felt perfect for me and my sweet Mila, sitting in the warm water together, my body wrapped around hers. I felt the cyclone of positive healing energy from thousands of people praying for and thinking of Mila. It circled around us and engulfed us.

Tomorrow begins the next chapter of our life...

- Julia, Mila's mommy

 
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The Power of Hope

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.

 
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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.

 
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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

Walking the Fine Line

 
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Before Mila was diagnosed with Batten Disease, I had never heard the term “terminally ill” used to describe children. I had seen photos of kids with Leukemia, their smiles wide and their heads bald and shiny. But I only allowed myself to feel the pain for a short time before turning the channel or flipping the page. It was too much for me to bare, especially once I had children of my own.

Now I find myself on the other side of the fence. The pain I have experienced over the past nine months is something completely different than what I had felt when thinking of the kids with Leukemia. The pain I feel runs through my veins, down my nerves and wraps around my heart. It is now part of who I am.

I consider myself a nostalgic person. I love to look back on the past and smile and laugh at the amazing memories I have collected along the path of life. Splashing in the lake with my brothers on hot summer days, kneading pasta dough with my grandmother, riding motorcycles through the hills. It makes me feel young, as if these times were just yesterday. But this changed when Mila was diagnosed. These memories have fallen down the totem pole to a place I can barely see. My joy of the past has been tainted. Without Mila’s health, these times don’t seem to matter much anymore. I still allow myself to go there, to relive the happiness and share these memories with my kids. Even to laugh about them. But in my mind, they have turned into experiences Mila may never have.

Instead of reminiscing about the past, I try to live in the now. But no matter how much I try to stay present, the future looms above us and forces us to face what lies ahead. My conversations with Alek now include terms like Rescue Medications, End of Life Plans, Do Not Resuscitate, Brain Donation... We turn to other parents of terminally ill children to ask about feeding tubes, leg braces, shaking vests to avoid pneumonia, wheelchairs. And the photos of children at the end of their fight with Batten Disease show us what our sweet Mila will endure in just months or years from now.

I carefully walk the fine line between reality and hope. A small fragile place between digesting that no child has ever lived with Batten and knowing we are riding a scientific wave towards curing genetic diseases. A cautious optimism. There are days when I have to remind myself of Mila’s reality, and not think about the possibilities our trial offers. I try to imagine that the trial is an impossibility, that all we have is the now. It allows me to be more present than ever. I watch the way Mila’s thin fingers gently rub the bumps on the Lego block, the way her soft hands tap the hard wood floor as she listens to the sound it makes. I watch the way her eyes get wider and her face lifts and smiles when I retell Goldilocks and the Three Bears. I simply try to be Mila’s mom by my daughter’s side, taking in the simplest of moments together. 

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 And then there are days I force my chin up to look across the wide blue Colorado sky and remind myself that Mila’s symptoms could truly be halted, even reversed. That the effects on children in very recent trials are astonishing scientists and bringing enormous hope to parents. When I climb into bed at night, I close my eyes and envision Mila walking up a dirt path with strong legs. I picture her little fingers holding her doll tightly by her side. I hear her giggling and singing Puff the Magic Dragon, perfectly forming the words that she now so desperately tries to get out. My mind hovers over Mila as she continues to walk up this path to a place where retina transplants and brain regeneration make a breakthrough. Mila lifts her head and looks out across the mountains, her smile wider than ever as she once again sees the colors of life. And there I am at the end of the road, on bent knees. Mila runs right up to me and hops onto my lap. She looks into my eyes once again and says “I love my mommy”.

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Julia - Mila's mommy

The Trees Who Stand Tall

 
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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.

 
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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.

 
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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.

 
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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