Featured Family: @fightingformaya.Photo Credit: Ulli Bonnekamp. This Is Today: #fightingformaya #mila2millions #thisistoday.

"That's the hardest part right now and that's the part I wasn't quite ready for, but it's part of the journey right now.".- Beau James

"I see Maya's resilience and her strength, and I'm so fortunate for where we are, but you just also wonder, 'Wow. What would you be studying now? What would your college experience be like?. '"

"We've been on this journey for over a decade now. The hardest part right now is watching my kids' peer group advance. Maya's friends who are wrapping up college. That's hard. That's probably the hardest part. "

Featured Family: @fightingformaya.Photo Credit: Ulli Bonnekamp. This Is Today: #fightingformaya #mila2millions #thisistoday.

Xavier leans down to help his mom lift Maya onto her feet, taking on some of the enormous strength needed to get through each day, trying not to dwell on the faces of their healthy childhood smiling down from the walls that surround them.

Both siblings get a regular enzyme replacement therapy which offers hope of slowing their condition, but Maya is older & started when her disease had already begun to take over. Xavier is mostly stable for now, but faces the heavy weight of his own mortality & that of his sister.

But Maya and Xavier were older when they were diagnosed with Batten disease and their type is slower progressing than Mila's. They were given the gift of more time, but the unfathomable understanding of what's happening to their bodies and brains.

I could never justify telling Mila that she would die in childhood. She was so young and I was fighting for her life. .

Featured Family: @fightingformaya.Photo Credit: Ulli Bonnekamp. This Is Today:. #fightingformaya #mila2millions #thisistoday.

Today, at 22 years old, she is unable to walk. Batten disease has robbed her of her speed. Life goes on around her, with people moving and running and going, and she just sits there in the middle. Because that's all she can do.

When Maya was little, she was the fastest kid on the playground. At 4 years old, she zipped around on her bicycle with no training wheels.

Featured Family: @fightingformaya.Photo Credit: Ulli Bonnekamp. This Is Today: #fightingformaya #mila2millions #thisistoday.

We’re starting with the James family who so graciously allowed us into their life. Two of their 4 children, Maya + Xavier, could have been any other child until they were each 9 years old, and then they were hit with Batten CLN2 disease, a degenerative condition no one survives.

Today, we’re trying something new - short videos we hope complement the photos.

With time, we expanded the campaign to include families facing other diseases, in other cities and homes. Each family is unique, but the weight of life and death is nearly the same.

When Mila died, I expected to stop, but realized it was this part of the journey that gets lost in the story of rare disease - life alone without your child. So I continued.

Nearly 5 years ago, I started my photo campaign, This Is Today, to allow you into the closet of my hopes and fears. It started with black and white unstaged photos of Mila, Azlan and me.

Featured Family: @fightingformaya.Photo Credit: Ulli Bonnekamp.This Is Today: #fightingformaya #mila2millions #thisistoday.

He's still independent - goes to a normal school, helps feed the animals on the farm, volunteers at a summer camp. But he knows that life isn't fair and that he too will soon be like Maya.