"Mila is our sunshine. Her smile is wide, her eyes sparkle, and her laugh radiates happiness. She takes pure joy in stacking every twig, eating every snow ball, splashing in every puddle. As her parents, she has shown us the beauty in even the tiniest details of life."
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. Existing clinical trials for a few types of the disease have stopped or significantly slowed degeneration, buying time as scientists continue working towards a cure. Unfortunately, for the variant of Batten Disease that Mila has, no clinical trial yet exists.
Our mission is to fund research and clinical trials to help Stop Batten Disease. For Mila's variant of the disease, there is no cure and no clinical trial exists. But experimental treatments for other variants of Batten are showing great promise. Our goal is to raise $4 million for a new clinical trial to give children like Mila a chance at life.
Families in this community have been pivotal in raising the necessary funds and awareness. Our hope is that together with other Batten organizations, we can work with scientists to stop the progression of the disease, no matter what type. And help fund research to find a cure and Stop Batten all together.
Mila's Miracle Foundation, Inc. is a 501(c)(3) nonprofit organization, with pending status. We are currently fundraising through our fiscal sponsor, Creative Visions Foundation, a 501(c)(3) nonprofit organization. All donations are tax-deductible.