In January, 2018, Mila became the first person in the world to receive a drug customized for just one person. It was named Milasen. Although Mila had lost a lot before she began treatment, she was given an unprecedented second shot at life. We still don’t know what Mila’s future holds, but we do know that her fight is giving enormous hope to so many more across hundreds of rare diseases that otherwise would have no chance.

Mila’s Miracle Foundation is working hard to pave this entirely new path for truly personal medicines.



 The day Mila was born was the happiest day of our lives. She came into the world strong and healthy. She walked at one. She talked up a storm. Then, things changed. At three, we noticed Mila would get stuck on words and one foot was turned inward. By five, she seemed to have issues with vision and walking. We had her continually assessed by doctors, from neurologists to ophthalmologists. But no one could explain what was going on. 

When she turned six, she got precipitously worse in a matter of weeks. In desperation, we brought her into the emergency room in hopes they would figure out what was wrong. After many tests, the doctors diagnosed Mila with Batten Disease. Our hearts stopped. Our bodies went limp.

Read Julia’s Blog - a window into the life of a mother fighting for her daughter’s last chance.


MILA’S gift to the world

Milasen gave Mila hope that we never thought was possible. But there are still millions of children around the world dying from genetic diseases like Batten.

We are on a mission to turn Mila’s incredible story into an entirely new treatment path of truly personal medicines. We are working to foster this new field and eventually make it accessible to many more across hundreds of rare diseases. Our hope is that our work will give Mila and many others like her a second chance at life.



Mila was given an unprecedented second chance at life through the first-ever truly personal medicine, Milasen. Now we need your help to pave this path for many more children like Mila across hundreds of rare diseases.

Mila's Miracle Foundation, Inc. is a 501(c)(3) nonprofit organization. All donations are tax-deductible.