Between ages three and five, Julia and Alek noticed Mila was getting stuck on words, pulling books close to her face, falling backwards and moving her feet in an unusual pit-patter.
Assessed by neurologists, ophthalmologists, optometrists, orthopedists, and speech, vision, occupational, and physical therapists, no one could quite determine what was wrong.
After a long week of many tests, Children’s Hospital Colorado, diagnosed Mila with Batten Disease.
Batten is a rare neurodegenerative disease. The illness causes seizures, vision loss, cognitive impairment and early death. Every year, hundreds of children are born with some variant of Batten. Worldwide, roughly 14,000 children are afflicted with the disease. Siblings have a 25% chance of also developing the illness. Luckily, Mila’s baby brother, Azlan, tested negative for it.
Each variant of Batten is fatal and none of them have a cure.
The family’s life ended the day they received this diagnosis. They were given no hope but they didn't accept that so Julia started a foundation and spoke with scientists around the world.
What they have discovered is that gene therapy has STOPPED and even reversed diseases like Batten. Parents of children in recent trials are ecstatic by the improvements they are seeing. Mila and children with her type of Batten deserve the same chance!
One of the best hospitals in the world is committed to running the trial in the spring of 2018 and covering the costs of the trial itself.
HOWEVER, the family needs to raise the additional $1M to cover the costs leading up to it. Or everything stops. All hope is lost.
Julia is working so hard to make this trial happen not just to save her daughter's life, but also to end Batten Disease and pave the way to ending hundreds of other rare diseases forever.
You can help this beautiful family and many others, by donating to their GoFundMe campaign—
YOU CAN HELP with #SavingMila
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Mila still has her love of life and her laughter, but her light is slowly going out. Time is running out. A path to a cure now exists! Please help her family.