WHAT IS batten disease?
Batten Disease is a rare neurodegenerative disease causing seizures, vision loss, cognitive impairment and early death. There is no cure... yet. Parents are forced to make excruciatingly painful decisions as the disease takes its course. Eventually, these families are left to face life without their child.
How common is batten diseasE?
Every year, hundreds of children are born with some variant of Batten Disease, all of which are fatal and have no cure. Worldwide, roughly 14,000 children are afflicted with this disease. Siblings also have a 25% chance of developing the disease, which makes the diagnosis all the more devastating for families as they wonder the fate of their other children.
the science behind batten
In Batten Disease, a simple gene mutation prevents cells from breaking down fats and proteins, leading to a build-up in the cells' trashcans, or lysosomes. This results in cell death and the body’s inability to function normally. The condition is autosomal recessive, meaning both parents must carry the same abnormal gene in order for their children to develop the disease. There are fourteen known variants of Batten - CLN1, CLN2, and so on - and each is unique enough to require its own research and trials. While great strides have been made over the past few years, there is still much to be understood about Batten as a whole.
IS THERE A TREATMENT?
As of yet, there is no cure for Batten Disease. However, recently, there are a few promising ongoing clinical trials which have proven to halt or significantly slow degeneration, and two more trials for other variants of Batten are in the pipeline. Unfortunately, there is no clinical trial for Mila's variant of the disease. The mission of our organization is to fund research and ultimately start a new clinical trial for the type of Batten affecting children like Mila, with the hope to eventually find a cure.
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 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. We are currently fundraising through our fiscal sponsor, Creative Visions Foundation, a 501(c)(3) nonprofit organization. All donations are tax-deductible.