09.21.2022

When Mila was diagnosed, the words "rare disease" conjured up only desperation and pain. As Mila lost her abilities, I watched as she adjusted and readjusted to find new ways of interacting with the world around her. I found myself on the playground, at the grocery store, in the hospital drawn like a magnet to other children like Mila. Each one finding their unique, perhaps beautiful, way of navigating life.

And then, two years ago, this little Rose came into my life, together with her father and her sister. She is rare like Mila. And she has no words. But today she has hope.

09.01.2022

When I first embarked on the sculpture project of Mila, I wondered whether I would ever feel ready for the bronze to be poured. A rendition of Mila frozen in time, standing in a park for a hundred years to come. This summer, after many months working with the artist on a small clay model, I walked into the studio to find it set off to the side. In its place stood a life-sized Mila at six and a half years old. I stopped and stared. It was beautiful. There was a little girl climbing on a tree, playfully pushing off the branch and reaching out to a hummingbird as it landed on her finger. But it wasn't Mila. Her bright shining eyes had been the window into her soul, and it hit me only then that no clay or bronze would ever capture that.

This project was my mom's idea, a way to be with healthy Mila playing in nature just as we love to remember her. But perhaps my mom foresaw that it was the process that would help me heal, as much as the final sculpture itself.

08.26.2022

I woke up this morning suddenly to the sound of my alarm. I had just been with Mila in my dream, a Mila around three years old, when the chimes pulled me away and back into the sobering stillness of my dark bedroom. Mila had been talking with me and playing with her toys on the floor as I walked around the room. I had bent down and wrapped my arms around her and felt her pull me in.... sensations I longed for that were ripped from me years ago. I pulled myself onto my knees and sat back on my legs, closed my wet eyes and reached out to grab hold of those images and feelings before they slipped away.

08.17.2022

Before I met grief, I remember hearing bereaved parents say that not a day passed that they didn’t think of their child. I assumed it was an exaggeration, a symbolic way to explain to themselves and others the depth of the pain they were feeling. But I’m on the other side now, and I understand.

As I walked through the airport last night, a little girl's voice echoed through the hallway as she talked to her mom. I clenched my jaw to stop the tears, but the sadness was stronger than me. I kept walking, my eyes blurred from wet lashes, and whispered, “I miss you, bug.”

Some days I wonder if I’ll ever find Mila, and others I feel like she's never left me. Today, as I lie in her bed, I feel her telling me that it's ok to think about her every day, but not to be sad, and instead laugh, explore, love and sing! I’m trying, I tell her, I just want you here to live these moments with me. But I quiet that part and wipe my tears.

08.12.2022

When Azlan was three, he asked me what I wanted to be when I grew up. At forty years old, I smiled and told him I wanted to work with scientists and doctors to help kids like Mila. He lit up and said, "Oh good! I'm going to be a doctor, so we'll be working together!".

A few weeks ago, Azlan joined me on a trip to San Francisco where I was invited to present to one of my favorite rare disease biotechs, Ultragenyx started by the inspiring Emil Kakkis. It was the first time I asked Azlan if he wanted to come with me and hear me speak about Mila and individualized medicines. He did. That morning during the video check, he stared up at the huge screen and watched himself laughing with his sister, and said he was sad. I rubbed his back and told him he didn't need to stay, but after thinking about it, he went to the back row and took a seat.

Thank you Ultragenyx for the opportunity to present and meet your incredible team, and make Azlan feel so welcome around a story that is just as much his as mine.