In January, 2018, Mila became the first person in the world to receive a drug customized to just one person named Milasen. Despite losing a lot before beginning treatment, Mila was given an unprecedented second chance at life. Mila’s fight was not in time for her, but her story is now giving enormous hope to children across rare diseases that otherwise would have none.
Honoring Mila: After two years of many emotions and hard work, the bronze sculptures of Mila and her grandmother, the fox, are finished and have been installed at Boulder’s Chautauqua Park Playground. Thanks to so many amazing people, our dream has come true.
MILA's STORY
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 and a brighter future for rare disease.
MILA’S gift to the world
Milasen gave Mila hope that we never thought was possible. But there are still tens of millions of children around the world dying and suffering from genetic diseases like Batten.
We are on a mission to turn Mila’s incredible story into an entirely new treatment path of individualized medicines. We believe that by making this platform approach accessible across diseases, we can help solve the drastic problem of rare disease in children. Our hope is that our work will give children like Mila a second chance at life.
THIS IS TODAY: A PHOTO JOURNAL
In a race to save my daughter Mila, I decided to open the door to my life, to my emotions.
This is me. This is my life.
WE NEED YOUR HELP NOW
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.
