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 Children’s Hospital Colorado 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.
About Batten Disease
Batten Disease is a devastating neurodegenerative disease which leaves children blind, cognitively impaired and unable to walk before they die at a young age. Currently, there is no cure. There are a few thousand children living with Batten around the world. And each sibling has a 25% chance of developing the disease as well, making the diagnosis even more devastating.
But we also learned there is hope. Recent gene therapy trials have shown to stop or even reverse diseases like Batten. We decided to start and fund the very first gene therapy trial for Mila's type of Batten, scheduled for the end of 2018. Our goal is to continue finding and funding paths to cures for Batten and other similar diseases.
Our mission is to find and fund paths to a cure for Batten and other neurodegenerative diseases. Families in this community have been pivotal in raising the necessary funds and awareness. Together with our incredible scientists and partner organizations, we hope that our work will save Mila and impact many other diseases.
WE NEED YOUR HELP NOW
Mila has lost her vision and much of her ability to walk and talk. But she is a fighter. We need your help now to give children like Mila a second chance at life.
Mila's Miracle Foundation, Inc. is a 501(c)(3) nonprofit organization. All donations are tax-deductible.