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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Today Was a Good Day

 
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My emotions run high. Tomorrow marks the end of our five month stay in Boston around Mila's genetic treatment, as we prepare to head home to Colorado. Our bags are packed and the kids are in bed. The sound of live Cuban music dances through our open window and lures me out onto the streets of our neighborhood. The air is warm tonight with a slight breeze just cool enough to keep me moving. A final evening stroll allows me the rare chance to clear my head and reflect on today.

It seems like just yesterday that I left the house on a cold January day for a run in the snow to breathe and prepare myself for what was to come - the excitement and fear around the unknowns of Mila’s upcoming treatment. Since that day, we have been in and out of the hospital countless times, we’ve had days where exhaustion, sadness and tension have worn us down to the ground, and other days where Mila’s genuine laughter or Azlan’s fantastical stories have lifted our hearts to the sky. Through all of this, I’ve fought hard to stay strong, to keep pushing ahead, to keep believing in Mila and the incredible advances in the science of today.

 
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As I stroll through the lamp lit streets, smelling honeysuckles in the breeze, I try to slow my breathing and focus on the now. Today was a good day. Mila was amazingly alert, her eyes wide open and glittery, her responses just right. She stood tall and strong and lifted one of her feet high when she walked with me right behind her. Azlan offered her toys and she held onto some of them, excited that her brother was playing with her. Mila radiated the energy we know so well.

The feeling in my body today is a far cry from the despair and sadness that I felt in January when we first arrived in Boston. Just before we left Colorado, I had started to feel I was losing Mila, the essence of who she is. There are no words to truly describe this feeling. It has been a pain unlike anything I have felt thus far. Watching my previously outgoing daughter lose her ability to see the world around her, to express her feelings in words, to run around giggling with her friends has been excruciating. But watching her spirit slip away, her lack of response to what has always made her laugh, has been unlike anything I have ever felt. I went to a place beyond pain and helplessness. A place where I desperately searched for some way, any way, to escape watching my Mila disappear forever.

 
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Batten Disease is cruel - it affects every cell in Mila’s body and brain. And she had lost some important abilities before her treatment started. But despite all of this, over the past few months she has picked herself back up and fought with a smile on her face. There are still moments and even full days when my heart sinks as I struggle to connect with her. She sits quietly with her head hanging low. Walking is slow and her feet drag with each step. But there are even more times where her reactions are sharp and her radiant energy fills the room. Her head is lifted high and her eyes are bright with curiosity and excitement. Her laughter is genuine. I beam as I watch how alive she is.

I don’t know what tomorrow will bring. I remain cautiously optimistic and continue to hold my cards close. But tonight I look up to the evening sky and allow myself to just be happy with today. My smile is wide tonight. My body and soul feel light. I realize there is no promise that tomorrow will be like today, and this may be as good as it gets for Mila and our family. But I'll take this good day, and hold tight to the hope that more sunshine lies ahead.

- Julia, Mila and Azlan's mommy

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