This Little Light of Mine

 
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Last night I fell asleep with Azlan as I read him a story. I woke up a little later, my face pressed against his sweaty curls. The room was dark, but the street lights outside our temporary Boston home shone through the blinds just enough so I could see his long lashes on his cheek. I lay there for a while looking down at him, his little hands grasping his hippo blankie. I smiled to myself as I thought back to when Mila was preparing for Azlan's birth. She was inseparable with her blankie so she decided her new brother needed one as well. I showed her numerous animal options - giraffe, monkey, sheep, lion - but as soon as she came across a hippo blankie identical to her own, just slightly more blue, she blurted out “that one!”. I kept asking if she was sure she wanted Azlan to have a hippo almost unrecognizable from her own. She was sure, without a doubt.

 
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The day Azlan was born, Mila opened her arms and carefully held him close. She proudly presented him with his new hippo blankie which he still snuggles with every night. But as Mila’s disease really started to take shape a year or so ago, she stopped sleeping with her hippo. It felt like an era was coming to an end. We had no idea at the time that it was symbolic of something much greater. Laying next to Azlan last night, I was transported back in time to the countless nights I fell asleep with my face pressed up against Mila’s, her fingers wrapped around her hippo, her thumb in her mouth, just as Azlan slept now.

When Azlan came into the world, Mila decided right away that she would call him “pasta legs”. She would giggle uncontrollably and squeeze his rubbery thighs. After a few months she moved on to calling him “cupcake head” which amused her just as much, and then finally settled on “boo boo”. It’s been close to a year now since Mila has been able to say his nickname. But Azlan hasn’t forgotten it. The other night at the dinner table, he looked longingly at his sister and said “I wish Mila would call me “boo boo” again”.

 
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My worries about Mila started when Azlan was just a few months old. I was falling in love with my little boy more and more each day, but my focus inevitably shifted to Mila as her gait and speech began to change. Azlan's first few years were spent in doctor’s appointments, in therapy waiting rooms, on planes, in cars. He was too often left to entertain himself. I told myself that independence is good, that he would grow up to be strong. But many nights I lay in bed crying out of a desperate desire to simply spend time with my son.

In the past few months, Mila’s disease has turned more steeply downhill. It’s still early in her new treatment, and in the meantime the brutal and inevitable progression of Batten Disease continues. At just the same time, Azlan’s development has taken off. His desire and ability to learn about the world around him astonishes us. But the stark contrast has been painful. The glue that connects Mila and Azlan - his stories and songs and her laughter and smiles in response - has just started to fade. She still lights up when she hears him, but our hearts drop when she doesn’t.

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Azlan may only be three years old, but he understands that what is happening with Mila is serious. Soon after Mila was diagnosed, Azlan introduced us to his imaginary brother Peter Max. He lives in California and has a pet dinosaur who goes to school with him. He teaches Azlan about asteroids, rainbows and baking pies. We hear about detailed adventures that they share. A few weeks ago, soon after we arrived in Boston, he told us that Peter Max died. I didn’t know how to respond. I calmly asked how that happened and he said that the ferryboat sank. We realized he had peered in at the news that night and heard that a ferry had infact sunk and passengers had died. But his story left a pit in my stomach. I have struggled with how much to tell Azlan about what is happening with his sister - just enough to grasp Mila’s difficulties and where they come from, but not too much to weigh on such a young soul.

 
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Through our painful journey, Azlan has been our guiding light. His excitement, like his sister’s, for even the simplest things in life reminds us of the fun in each day. Despite being away from his home and school, and quarantined from other kids to protect Mila from the flu, he never stops laughing and loving.  He tells us wildly imaginative stories, uses his “map” to guide us on walks, and makes up songs and dances that bring on the widest smiles even in the darkest moments.

On a cold rainy evening last week, we bundled up and headed out for a short walk. I wasn't in the mood, but we try hard to have Mila push her stroller at least once a day to keep up her walking. Azlan realized that we were tired, especially Mila, so he started singing "This little light of mine". My back ached as I walked with bent knees behind Mila who slowly moved each foot forward. But I joined in the song and before I knew it we were back home and we were all in a better mood.

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The other day, while we were making Valentine's Day cards, Azlan told us that Peter Max is alive again. And he’s back to sharing his adventures. I was so relieved that I pulled Azlan onto my lap and hugged him close. He smiled and yelled “let me go!”, and Mila giggled.

- Julia, Mila and Azlan's mommy

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