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One family's battle against Batten disease

 

February 16, 2017

Courtesy photo Mila and her brother Azlan, with Julia Vitarello and Alek Makovec, Mila’s mom and dad, before she was diagnosed with the rare neurodegenerative disorder, Batten disease.

Mila Makovec was an outgoing toddler who liked to sing, climb, hike and run. She enjoyed playing in the snow and watching Elmo on TV. But that all changed in late 2016, when her symptoms for a rare neurodegenerative disorder known as Batten disease became acute, and doctors at Children’s Hospital were finally able to make the diagnosis of a disease that affects only about one in every 100,000 people.

Batten disease causes a variety of symptoms, from seizures and dementia, to gradual loss of sight and motor skills. Mila is now blind and suffers from a host of other symptoms, and the trage...



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