Chip Chick
Longmont, Colorado. Batten disease is a group of rare, incurable neurodegenerative diseases. Neuro-(brain, spinal cord, and nerves) degenerative-(progressive deterioration and loss of function of organs or tissues).
These types of diseases can cause many problems with movement, speaking, breathing, and death.
Little Mila Makovec was diagnosed with a type of Batten disease called “CLN7” in 2016 when she was just six years old.
Her life started like a typical healthy little girl, running, playing, and singing. She talked up a “storm,” her mother, Julia Vitarello, said. “At three, we noticed Mila would get stuck on words, and one of Mila’s feet 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.” Mila had seizures and could no longer speak.
Finally, she was diagnosed with Batten disease. It was a relief to have answers, but at the same time, the symptoms of Batten’s for children were severe.
Epilepsy, Parkinson’s, blindness, and dementia were top on the list, under death. The condition was 100% fatal.
GoFundMe; pictured above is Mila
Sign up for Chip Chick’s newsletter and get stories like this delivered to your inbox.
