Sometime in the last few years, I remember pleading out loud for a life without pain. But the words didn’t feel right. I knew my pain would always be with me. Yet I desperately wanted joy. And then, one day, I looked down and realized I was finding a way to hold both...

Mila came into the world strong and healthy. She was a runner, a climber, a singer. But then she was diagnosed with Batten disease - a rare and fatal condition with no cure. She began losing each of her abilities. She no longer had the words to tell me what she was thinking. She no longer had the voice to sing her favorite songs. She no longer had the ability to reach out and touch me. But it was the small moments that allowed Mila to feel heard and felt, allowed her to feel my love, allowed us to connect as mother and daughter…

Azlan has had to learn life’s hardest lessons at such a young age. He was only two when his outgoing talkative big sister was diagnosed with a rare and fatal disease. Yet his world isn’t dark and sad like I feared. Instead, it is full of light and a love of life. His compassion for helping others has grown just by being part of the extended family that loves Mila. He has turned the trials and sorrow into an appreciation of the simplest moments in life.