Mila's WAVE

 
 

Sometimes I wonder what Mila would be passionate about if Batten Disease wasn’t forcing her to concentrate every ounce of her amazing energy on surviving. I have been lucky enough to be part of her every day, to see the fire in her eyes, and experience her excitement for life. Mila used to sing the words to "Rudolph the Red-Nosed Reindeer" at the top of her lungs, year round, while flipping her hips side to side. She would gobble up an entire pizza and with a full mouth ask if I would share mine. She would run to the edge of the pool and jump in with no idea how to swim. I remember when Alek and I first took Mila skiing at 2 years old. We buckled her into her little boots, snapped on the skis, and stuck her at the top of a barely noticeable bunny hill. With almost no slope to help her move, she looked through her goggles at us with an expression of, “What am I doing here?” Then she stared up at the mountain towering above us, and we knew where she wanted to go. We shrugged our shoulders and jumped on the lift to the top. She laughed out loud in excitement as she zoomed down the mountain taking turns between Alek’s legs and then mine. Up and down we went. Mila couldn’t get enough of skiing, of life.

 
 

The next winter was her peak. She graduated to a ski leash and was fearless as we yelled out “look at the trees” and she turned to the right, “look at the lift” and she turned to the left. “Pizza!” and she tried to stop. Mila was catching on, growing up. But the next winter when she was 4, she started to get scared. In retrospect, I realize that her vision was probably starting to go. And her sound processing was probably on hyper drive to compensate. She was easily startled and easily fatigued. We didn’t take Mila up to the mountain much that year, and we started to worry.

Mila never went skiing the following winter when she was 5. It just seemed too much for her. By that point, my concern had turned to anxiety—an unknown we couldn’t pinpoint and neither could any doctor. Over the past two years, I’ve painfully watched Mila slowly revert back in time towards infancy. She had been bounding up and down our staircase. But I had to start holding her hand, then having her crawl, and eventually picking her up at times to carry her down. She used to jump like an agile frog from the couch to the table and back, but she started to trip, to fall, to bump into chairs and tables. She started collecting bruises and black eyes. Mila had mastered using her fork and spoon, receiving applause as she twisted up her spaghetti Italian style. But she started dropping her fork and using her hands. She choked so we cut her food into small pieces, and now we often revert to the blender to make sure she gets enough nutrition.

 

It seems like just yesterday I was buying puzzles and word games. But I slowly gravitated toward simpler toys, little figurines and dolls. And now that Mila has lost her vision, we stick to tactile toys and rattles—the same toys I would have bought her when she was a baby. Last summer, she was wearing underpants with ponies on them. Now she’s back in pull-up diapers. She used to hike with Alek for hours on end and belt out the words to her favorite songs. But those songs slowly disappeared from our life, Mila became quieter and now she mutters just a few words she can conjure up like “Mommy.”

 
 

But our saving grace has been seeing Mila’s character, her laughter and smiles shine through despite her losing her abilities. It astonishes us every day that a child faced with such difficulties can be so happy and still love life so much. We’ve started bringing up memories from when Mila was little to the kids and reminding her of fun experiences or things that she used to do. I often have to fight off the tears when I retell the wild adventures of Mila bug. But it also feels good not to force them away anymore. And each time I get to the point where something funny use to make Mila laugh, she lights up and remembers it and giggles uncontrollably. This gives me such HOPE! Mila is still with us, and she's so strong.  

But we know her light will soon fade if she doesn’t get a treatment to stop this horrible Batten Disease. It seems unreal to me that my growing, advancing little girl hit her peak at just 4 years old. Her wave rose up and up … and now it’s falling back down. People casually throw out that “life is unfair.” But these three little words don’t do justice to what my sweet Mila has had to endure. What our family has had to experience by her side. Every day, I force myself to lift my head and look to the sky and tell myself that there IS hope for Mila, and I’m doing everything I can to give her the best chance possible at life.

-Julia, Mila's mommy

 
 

Everyone's Sunshine

Just a few days after Mila was diagnosed with Batten Disease, an old friend put me in touch with a woman she thought I should speak with. This woman had lost her son two decades ago when the young, aspiring photo journalist was killed in a war-stricken area of Africa. Wise well-beyond his age, her son’s mission to expose the pain and fear in this area of the world caught him in the wrong place at the wrong time. Now, his mother strives to keep his spirit alive by encouraging other young activists to communicate their messages through media and art. The story moved me, even at a time when I felt such deep pain about Mila.

The news that Mila had a terminal illness with no cure had just barely begun sinking in when I had this phone call. We spoke for a while, most of which is now a blur, but there was one message she shared with me that shot through my body, made me fold over in pain – less from a place of sadness, more from the realization that she was right. She told me with conviction that Mila has a much bigger purpose in this life than I ever would have imagined. Her gift to me was being my amazingly happy, loving daughter who showed me the joy of every minute of every day. But her gift to the world would be something much larger. In that moment, my throat locked up, the tears filled up in my eyes, I pulled the phone away from my face and cried. I knew she was right. It almost felt like I let go of Mila just then, I gave her up to the world around me. But I quickly pulled her back in. What she said hit me like a bullet. But I wasn’t ready to sacrifice my sweet little girl up for the good of others. It was easy to write this, even as I created our website. But it was excruciatingly painful to believe it.

A number of months have passed since this conversation. The message has come to mind many times since then, but I still could not digest it. I believed that the clinical trial we were starting could stop the disease not just for Mila, but for other children like her. But when I looked myself in the mirror, I was honest with myself. I simply wanted to save Mila’s life.

And then something happened. I woke up early one morning and rolled over slowly to grab my phone as Mila lay sleeping peacefully next to me. I opened my email. A family in Europe with a 7-year-old boy suffering from the same type of Batten as Mila heard about our trial from a doctor. I was caught off guard as I read a long message from the father of this little boy. His son was about Mila’s age and was suffering the devastating affects of Batten - he has lost his vision, his ability to walk, and his ability to talk. And just that day, he and his wife had received the heart wrenching news that their perfectly healthy three year-old son had Batten as well. His pain and desperation shot through my phone, up my arm and into my heart. I could barely breathe. This was his Azlan. His shining light in the darkness. A little boy who climbed over rocks and ran through fields and sang songs. Untouched so far by the horrible disease that has robbed his other son of everything. He begged for hope. He could not go through this again. I knew his every thought. I had lived each of them for months and months as I waited for Azlan’s diagnosis. We were so incredibly fortunate that Azlan was spared. We had found out just a few weeks before. But this family was not as lucky. And I wept in pain for them. I pulled my phone away, lay back on my pillow, and tried to wrap my head around how it was possible to have a deeper pain than what I was experiencing with Mila? How could there be a place below where I was now? How could any family be dealt this amount of pain in one life?

 
 

I looked over at Mila, laying quietly on her lilac pillow, her long dark lashes asleep on her face, one hand holding the other. Her inseparable friend, Olaf, lying on her shoulder. My pain for her, for my family, for our life pushed up my throat as I tried to breathe. And then I thought of this family and their little three-year-old. It was the first time that I truly felt what an incredible gift Mila would give the world. I cannot know whether the trial I start will be in time to save Mila’s life. But I do know that because of her, for the first time ever, children facing this terrible terrible disease will have hope for a long, happy life. And this father might be able to grow old with his son.

Mila has touched so many people’s lives over the past six years of her beautiful life. And now her light radiates so much farther than I could ever have imagined. I look at her today and feel in my body that my sweet sunshine, my Mila bug, has an amazing purpose in life. This thought gives me even more strength to keep fighting for her life.

-Julia, Mila's mommy

 

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Being a Mother

Today, I face the joy and the pain of being a mother. This Mother's Day, I ask myself what it truly means to be a mom? A few months ago I might have said to make your children laugh, to teach them what's important in life. But now I answer differently. To make today a happy day - as if there were no tomorrow. To radiate love to your children every day. To give every bit of yourself for the life of your child.  

Today, I've thought about how amazing my own mother is. She has allowed me the space to grow into the person I am, together with the guidance to direct me when I was lost. She encourages me in whatever I do and makes me feel strong and confident. She always gives me hope in even the darkest moments. And most importantly, she has shown me through her actions that her love for me is constant and nothing comes before your child. Nothing. When I have really needed someone, my mom has shown up. Not a month later, not a week later, not even a day later. Right then, when I've needed it most she is there. Always. And the times I've needed someone were often the times that were most inconvenient for her. That's just how it goes. But each time she's managed to put everything aside to be there for me. And the list isn't short.

When I shattered my ankle and went through excruciatingly painful surgeries, she fed me and bathed me for weeks. When my water broke 3 months before my due date she was in Colorado by my side within hours distracting me with stories and giving me reasons to have hope. When I went into labor with both Mila and Azlan, she was there before leaving for the hospital and there to watch my babies come into this world. And when Mila was admitted to the hospital in December, my mom was in the room with us that same day. She stayed for two months to hold together our family and help me put one foot in front of the other, showing Mila and Azlan my love every day. All of this while holding a full-time job and putting her money toward the care we need for Mila.

So when people ask me how I find the courage and energy and drive to put together a clinical trial to save my daughter's life, to attempt to raise millions of dollars in one year and to try my best to be in the moment with my kids - it's because of my mom. 

So thank you, mommy, for instilling in me the love, strength, courage, and hope I never knew I would need to rely on so greatly. 

Julia - Mila and Azlan's mommy, and my mommy's daughter

My Little Trooper

Azlan. My little trooper. What would I have done without him over the past few years? He has provided sweetness, laughter, and light when I’ve needed it most.

When Mila was one, I had a few miscarriages, and tests came back showing that it would be nearly impossible for me to have another child. I was heartbroken. Since I was young, I always wanted lots of kids — at least four, ideally five. I used to think of names for them. And here I was being told that I couldn’t have any more. I was so grateful for my giggly Mila bug, but I didn’t give up hope. I put my faith in an old Chinese doctor, and a few months later I was pregnant with Azlan. When my little boy came into the world, I felt so incredibly lucky. He was gentle, sweet, and happy in just about any situation. Mila held him and kissed him and refused to call him anything but pasta legs and cupcake head. She tried to teach him how big kids do things. I carried him on my body wherever I went, nursed him throughout the day, and snuggled in bed with him every night. We were one.

 
 

But the easy rhythm of our lives changed when he was just a few months old. I started to question what was happening with Mila. I began to look into therapies, fill out forms for evaluations. And my focus shifted. Six months later, we moved Mila from her preschool with all of her friends to a new school where an IEP offered her extra help with motor skills. The new timing was rushed and didn’t match Azlan’s sleep schedule, so I was constantly waking him up to bring him back and forth to school. Soon after, Mila started speech therapy three times per week, sometimes four. I would bring Azlan in his car seat, nurse him while we waited, occasionally take him on a walk around the neighborhood to kill time. His very first interactions with other little ones were made in that waiting room. Then we started occupational therapy, which was 30 minutes away, so I dragged him there, too. I constantly asked myself whether I was being fair to him, depriving him of playdates with kids his age and the attention he needed. But my hands were tied. And he seemed happy, so I continued to fight off the guilt.

No one knew what was happening with Mila, so I started learning about neuroplasticity and the brain’s ability to create new pathways, to regain skills. There was promising evidence that it helped, so I felt like I had nothing to lose. That is, except depriving Azlan of his childhood. I took Mila to a week of neuro-movement therapy in the Bay Area more than once, to a neuro-optometrist in Chicago, to a listening therapy in Toronto, to an osteopath in Boston. Azlan would be strapped to my back as I pushed Mila in a stroller through the airport, through the streets of these cities, to the therapies. Azlan would calmly look around as I brought him in and out of waiting rooms, hotel rooms, airport bathrooms while my focus was on helping Mila. My attention was almost always on her, but my heart yearned for time alone with my little boy.

In the last six months, as Mila declined and I aged, Azlan grew into an independent outgoing kid, an entertainer for our entire family. He strums his mini guitar and makes up songs — his favorite being “Dangerous Waterfalls.” He sings the soundtrack from Frozen, which sends his sister into extreme giggles. He jumps onto tables and roars and bellows like animals, asking us to guess which one he is. Mila’s neutral stare breaks into her wide smile and sparkly eyes. At the dinner table, he rhymes and recounts elaborate tales, turning the end of a tired day into laughter. After bedtime stories, Azlan climbs on top of his sister and sits on her head until she struggles to push him off. She laughs, and he continues to show his love for her as he sticks his face up against hers and pushes his nose into her mouth. More giggles.

The other day I was lying on the floor of Azlan’s bedroom talking with him. I said, “Azlan, you know it’s very hard for Mila to see. Actually, she can’t see what’s around her — like our house, her toys and books, the trees and clouds outside.” He immediately responded, “I know mommy. Mila can’t see.” I was shocked. Sometimes it makes me so sad to think of the emotional burden that he is facing at just three years old. But he seems to have an understanding beyond his age of what’s going on. Despite all of this, he is so happy! So I try not to overthink it. Recently, I’ve made more of an effort to carve out time to be with him, at his level, to talk about dinosaurs and robots and make pretend caves in the bushes and run through the grass and scream. I take him to the movies and hold him in my arms as he stares with fear and excitement in his eyes. He loves going back over the movie plot with me every night.

Last summer, the kids started at a small one-room preschool together. At first, Azlan stayed close to Mila, but he started to gravitate toward the other kids and learned that he was, in fact, his own little person. He would still sit near Mila at lunch and check in on her. It brought me such happiness. For the first time, it felt like they could both be kids, together. One afternoon a few months ago, I arrived early for pick-up and watched from the back of the room. Azlan and Mila were sitting on the floor at circle time, and each kid in the class was taking a turn and choosing someone to get up and hop with. No one picked Mila. When a new shy girl stood up and looked around, Azlan raised his hand high and yelled out “Pick Mila! Pick my sister! She wants to hop with you!” Tears poured down my cheeks. I was so proud of my sweet and strong little boy.

Azlan has been my right-hand guy. His spirit has gotten me through the uncertainty, the battle, the grief. Thank you, my little one.

Julia - Mila & Azlan's mommy