2026-01-22
42 分钟Julia Vitarello and her daughter Mila lived in Colorado where they enjoyed hiking and skiing in the Rocky Mountains.
And then really quite drastically changed when my daughter was diagnosed with a rare 100% fatal genetic disease.
At the age of six, Mila was diagnosed with baton disease.
It causes neurons in the brain to stop working and it eventually leads to an early death.
She had already lost her vision.
She had already lost her words.
She was starting to slump over and it was very hard for her to sit up straight.
Swallowing was also difficult, so she was eating pureed foods and then had a G-tube put in,
so her foods were primarily through a tube into her stomach.
She was not responding and laughing at the funny parts of the books and the songs that she normally had.
Doctors told Julia there was nothing they could do about Miller's ongoing neurological damage.
But that didn't stop Julia from trying.
She was missing one of two mutations that would cause her disease and no lab could find it.
And in my quest to find that, that led me down a very different path that was quite unique.
The doctor who eventually discovered the genetic cause of Mila's condition had a theory.
He suspected that her disease might be paused by using a drug specifically tailored to her.
That led Julia to start frantically raising money to test out that hypothesis.
I started a nonprofit foundation and had to raise millions of dollars selling what felt like,
you know,
lemonade and cookies and trying to find doctors to come together and create a treatment for my rapidly declining daughter.