The Crystal Ball

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Eight months ago, Mila began a first-ever genetic treatment. We were entering unknown territory. We knew nothing could be worse than the trajectory of her disease, and could only hope that it might stop the degeneration. With her diagnosis of Batten just one year earlier, I felt I was handed a crystal ball that would show the remainder of her short life. I wanted to throw that ball as far away as possible. But it grew around my hands and wrapped around my fingers. My eyes were forced open, forced to look inside and see my daughter growing older, losing every ability and happiness she had known. I saw her propped in a wheelchair by day, lying limp in a bed at night. Her weak neck supported, a feeding tube tucked under her shirt. Her body shook with constant seizures. Her head tipped back, her mouth fell open, and her stare was blank. A schedule of medications taped to our fridge, a Do Not Resuscitate letter nearby.

The crystal ball showed me the life of a child with Batten, of the many children that came before Mila, and of those that were still fighting this horrible disease today. I saw countless doctor’s appointments, rushes to emergency rooms and long hospital stays. I stared at MRIs of rapidly shrinking brains. I saw mothers and fathers lifting their children from their beds, into chairs and out of cars. I felt the strain in their backs and arms, the pain in their necks. I sensed the confusion and anger in their marriages. I heard their tears awaken quiet bedrooms in the middle of the night.

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I continued watching as little sisters and brothers yearned to be heard, their simple childish joys often ignored by their families in moments of exhaustion. Their concern for their siblings was so genuine, their love for them so pure. The pain spread like a river across grandparents, aunts and uncles, cousins and communities surrounding them.

Despite this darkness, I noticed these families managed to adapt to their new realities. I saw how ever present they were in their lives, how much they appreciated every day, every moment with their children. I saw a brother grab his blind sister’s hand and rub it on the bark of a tree. I saw a mother nuzzle noses with her son on her lap. And a father snuggle into bed with his kids as he slowly read their favorite story. I saw smiles. I heard laughter. But the pain was always there.

I saw Mila’s future.

And I knew that I had to fight with everything in me to change the story unfolding in her crystal ball. I put sleep, fear and embarrassment aside to somehow put scientists and companies together, to raise the enormous amount of money needed to fund their work, and constantly remind everyone of the urgency. Somewhere along the way I paused. I faced something I had continually pushed away - the realization that my fight might not be in time for my sweet Mila.

Then my path crossed with a Boston scientist and the stars aligned. Mila was given unexpected hope. What started as just an idea, turned into a race against time that took us through late nights, weekends and holidays on a mission to stop Mila’s disease. He built an ever-growing team of more scientists, doctors, institutions and companies around the country and abroad to make a treatment happen in record time. No one stopped to take a breath. They designed an entirely new drug targeted at Mila’s genetic mutation, tested it in the lab and in animals, produced it, and finally got approval to proceed with her treatment. All in one year.

This past January, we moved our family to Boston with a fear of the unknown ahead of us, and a hope we never imagined we would be allowed to feel. As soon as the hospital received the drug, the team was ready and waiting for the first injection. Every day mattered. Mila had already lost her vision and her ability to talk. Her barely noticeable seizures had just exploded a few months before and grew to thirty per day that lasted minutes, arms and legs moving violently. Her swallowing was getting worse by the day. Her body was slumped and she could no longer sit up alone. Her legs were giving out when she stood or walked. But none of these regressions compared to watching her little light start to go out. We were losing the Mila that we knew and loved. Her brain was atrophying, and with it her awareness of the world around her, her smile, her laughter.

Today, Mila is eight months into her treatment. People ask me how she’s doing and I have to admit that it has been hard to find the right words to answer. Friends and family ask in excitement if she’s better now, if she’s been cured. They dream of a day when life will return to normal. But it’s not that simple. Batten disease affects every part of the brain and body. It’s unbelievably complicated and still very un-understood. And Mila had lost so much before her treatment.

Before responding, I try to stop and reflect on how Mila is that day. Not yesterday, or what I hope for tomorrow. But today.

No matter the answer, one thing seems to be clear so far - her rapid downward slope has stopped. Something I had thought would only happen in my dreams. And some abilities have improved. She now stands tall and upright. She can sit crossed-legged alone on the floor without swaying or falling. Her legs no longer give out when walking and she climbs the stairs with alternating feet, still with full support. Her seizures have greatly decreased in number and generally last only a few seconds. Instead of arms and legs flailing, a short giggle. Her swallowing has improved and she’s able to enjoy her meals. And her hands will occasionally tap the table and feel for objects now that they aren’t so tightly clenched. But what has brought me the greatest joy is seeing my Mila again. She is alert more often and responsive to the world around her. She follows her favorite stories with expression on her face, gets excited and laughs out loud when a dog licks her hand, and smiles when her brother comes up with funny words.

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Not every hour and every day looks like this. There are times when everything is harder for her - her body leans to one side, her feet drag on the floor, she doesn’t respond to what usually makes her smile. My heart still soars and sinks. I still have no idea what tomorrow will bring. And I am now faced with the incredible challenge of rehabilitation of the skills she has lost.

 
 
 

But despite all of this, Mila’s treatment has given her real HOPE.

I look back into the crystal ball today and Mila’s story looks different.

 
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With the incredible hope Mila has been given, I have realized that Mila’s life truly has a greater purpose than we had ever imagined when she was born. She isn’t just our sunshine. She is a little ray of light, a little spark, for everyone. Mila’s treatment is allowing me the chance to ensure that her spark will ignite others, and one day soon there will be a bright light where there was once just darkness. Not just for Mila. Not just for Batten. But for the millions of children around the world with devastating genetic diseases.

I will keep fighting…

-Julia, Mila and Azlan’s mommy

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This Empty House is Full

 
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I give the front door a push with my hip as I turn the key in the old lock. The door opens with a pop, the dried paint coming unstuck from the door jam. I stop for a moment and look into the front hall, empty, just as we had found it when we first moved in, when I was pregnant with Mila. The emotions from eight years earlier came rushing over me. The excitement of actually owning our first house. The charm of the 1930s high ceilings, curved moldings, large old windows with imperfect glass. The cracks on the walls, the space between the pine floorboards where cool air came up from the crawl space below, the tiny bedrooms that barely fit a queen bed. But it was ours and we were moving in just as we expected to have our first child.

Time has passed and now I walk through the same front door with tears streaming down my cheeks. Today is our last day to breathe in the memories we created in this old house. The house where Mila and Azlan came home to when they were born. Where they took their first steps and spoke their first words.

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Two years ago, we decided living in downtown Boulder no longer made sense for our family given that Mila’s needs were changing. We yearned for quiet, for more open space for Mila to move around the house, for the views and sounds of nature that so naturally calm us. Riding bikes around town as a family wasn’t in the cards for us any more so we gave that up for a more rural, peaceful setting. The trails and swimming lake by our new house allowed us to spend our free time nearby without having to get in our car, something that was becoming harder for Mila.

But we always dreamed of holding onto our cozy old house and renting it until we decided to move back in. But with our family's new reality, we realized we needed to simplify our life, and concentrate on today, not tomorrow. So we put our house up for sale, and then my focus switched to taking care of Mila and Azlan. I never found the time to reflect on what it meant to lose this house so packed full of memories... until now, on the eve of saying goodbye to it forever.

 
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I decided to come to the house alone, one last time. To make peace with the fact that we would not bring our kids up in this home like we had imagined. Since Mila’s diagnosis of Batten Disease, material items have little meaning to me. It’s the emotions, adventures and memories that really matter. But today I’m struggling with accepting this and saying goodbye to the house that holds the best memories of my life. 

I walk through the tiny front hall surrounded in old glass windows, through the french doors and into the living room. I smile as I cry remembering little Mila scooting along the fireplace before she learned to walk, and how she use to climb up onto her little toy kitchen and sit on the very top, beaming with pride as she turned to make sure we noticed her accomplishment. I remembered our first Christmas in this house, cradling little newborn Mila in my arms as I danced around the tree in the back corner of the room.

 
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I walked through the empty living room and into what was our TV room. I laughed to myself thinking of Mila attentively watching Plushenko skate in the Olympics on the big screen above her and trying to mimic his moves. She twirled around the room, dropping her head and lifting her leg high, then sitting on the wood floor she spun around and around. Extending off the TV room was the kids' small playroom, surrounded in glass windows with sunlight streaming in. I remembered Mila standing behind her little grocery store in the corner of the playroom, tapping on a plastic cash register and selling vegetables to tiny Azlan who stood facing her with an orange purse over his shoulder. 

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I climbed the steep stairs and stepped onto the landing. I thought back to when I stubbed my toe at the top and dropped to the floor in pain. Before I knew it, my 9-month-old little girl had scooted across the floor, climbed up on my lap and kissed me on the cheek. My pain disappeared. In that moment, Mila transformed in my mind from an infant to a little person. Her innate empathy and wide smile gave me a glimpse of who my Mila would become.

 
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I moved into the nursery that was Mila’s and then Azlan’s. I use to run in and out of the room making a new animal sound each time. The kids would jump up and down in the crib, laughing uncontrollably. Two owls sat on a tree hovering above Mila's bed. She would peel each branch decal off the wall, and I would stick it back on. The game continued until only half the tree remained.

I walked next door to my and Alek’s room, with the big glass doors that opened onto our deck. I closed my eyes and remembered the kids splashing in their blue plastic pool on hot summer days. And before bed, we would cuddle up on the couch and say goodnight to the trees and the squirrels, the mountains and the moon.

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I made my way around the house, taking time to stop in each room and allow myself to travel back in time and remember not just the images, but the emotions that followed. Every little corner of our home held a beautiful memory. 

When I passed the doorway to our kitchen my heart stopped. On the left side of the door jam were black marks showing Mila’s height at each birthday - one, two, three, four, and five. On the right side were the marks for Azlan - one and two. I ran my hands over the lines. I dropped my head and squeezed my wet eyes tightly closed. The painter would be coming in a few hours to add a fresh coat of paint and cover up the lines that represented the best years of my life. Just three months after we moved out, Mila was diagnosed and our lives changed forever.

The house may have looked empty to a passer by, but through my eyes it was full, full of the memories that keep me going every day. When I walked into the house that day, I expected only tears and sadness. But when I left, I felt lighter. Reliving these moments made me cry, but it also brought smiles, even laughter, as I thought back to each one. I didn’t have to leave them behind like I had feared. I let these memories fill the house, one by one, until they piled into the rooms and pushed up on the roof. I brought this home so full of memories with me as I closed the door behind me, one last time.

- Julia, Mila and Azlan's mommy

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