A second chance at life

Our mission is to help find a cure for Batten Disease. Family organizations in the Batten community have been pivotal in funding scientific discoveries and clinical trials, but none is specifically targeting the variant afflicting children like Mila. We want to do our part and raise $4M to fund a gene therapy trial for children facing Mila's type of Batten. Our hope is that scientific advances we fund will also help Batten as a whole, and can be used to combat additional genetic diseases affecting hundreds of millions of people worldwide. Every day matters, as we race to find a cure for this devastating disease.



where is your donation going?

All funds will go towards research and a clinical trial for Mila's variant of Batten. We have assembled a team of scientists from around the world with experience in Batten disease and clinical trials. We are focusing on gene therapy as it is the fastest and most cost-effective path to a cure. A gene therapy approach costs roughly $4 million and includes pre-clinical research, production of the gene-therapy drug (vector), toxicity study, and ultimately the design and launch of the clinical trial itself. Our goal is to fund research that will help not only Mila and other children facing her diagnosis, but will also lead to discoveries that could help other diseases. 



Gene therapy involves DNA being injected into a patient to treat a genetic disease, such as Batten. The new DNA contains a functioning gene to correct the effects of the disease-causing mutation, and is introduced via a benign virus. Great strides have been made in gene therapy over the past decade, showing promising results in hundreds of trials.  In addition to helping combat Batten Disease, gene therapy holds promise for treating a wide range of other diseases, including cancer, cystic fibrosis, heart disease, diabetes, hemophilia and AIDS. The more gene therapy trials that are funded, the closer scientists get to being able to fix the genetic code and saves millions of lives.



Mila's Miracle Foundation to Stop Batten was formed in December 2016 upon learning our daughter Mila had Batten Disease: a fatal, devastating genetic disease. We now realize that Mila’s life has a greater purpose than we had ever imagined when she was born. She isn’t just our sunshine. She is a little ray of light, a little spark, for everyone. Our hope is that her spark will ignite others, and one day soon there will be a bright light where there was once just dark.



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 start a new clinical trial and give children like Mila a second chance at life.


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