Mila's Miracle

I was honored to be a voice at @HHSGov alongside friend and fellow Batten mom @Judy__Stecker, as we both fight for her son Wheeler and the millions who follow. #mila2millions

This is no longer a technology problem, it's a human problem. The moral imperative burns strong, cutting across political parties and country lines.

With political divisions driving people apart in the US and around the world, it's been powerful to see people of all walks of life coming together to change our outdated system of access to medicines to help millions of sick and dying children.

HHS Roll-Out Video: youtube.com/live/XWTO5khja…

It's a logical, common sense solution that regulators around the world are aligning on, and it's the beginning of the commercially viable pathway I've been fighting for - the one that gets the flywheel going and moves us from Mila to Millions. Onward! #mila2millions

This year marks 10 years since Mila was diagnosed with Batten disease and my life took a turn that has forever shaped me. Since then, I've been on a mission to save my daughter, and when it wasn't in time for her, to save the millions who follow.

Today, on this February day, I will turn to the forest as I always do where I can feel Mila zipping through the trees, on the winds and in the birds. I find her in the little things. #Mila2Millions

The bright light of warmth she radiated through every room in our house isn't there any more. I sit and hold this poem a friend wrote for me, the English adaptation of her original in Chinese.

Today marks 5 years from when Mila died. I sit on her big bean bag chair and feel the emptiness in our home. I have no daughter to wrap my arms around, no cheek to kiss.

This Is Today: this-is-today.com/photo-journal Featured Family: Berent-Weisse Family @cureangelman Photo Credit: Ulli Bonnekamp #Mila2Millions #ThisIsToday #RareAsOne

So her mom grabs those short windows when Quincy is napping or occupied to take her other girls out to get their nails painted so their life can feel relatively normal for just one moment.

Quincy's parents live with a perpetual sense of guilt. If not for Quincy, it's for her sisters. If not for her sisters, it's for Quincy.