Rare Diseases

Family racing to raise funds for daughter facing incurable genetic disease

A family is in a race against time to save their 6-year-old daughter from a fatal genetic disease that currently has no cure. Mila Makovec, who was diagnosed with Batten disease in December 2016, has already lost her sight and struggles to walk and talk.

“There is no other way to put it – my 6-year-old daughter, Mila, is dying,” Julia Vitarello, Mila’s mother, wrote on the family’s GoFundMe page. “I lie by her side every night when she sleeps and my heart bleeds. My face burns from the tears.”

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“Mila could be your child,” she continued. “She splashed in the pool, begged for chocolate ice cream, and sang her favorite songs. She rode bikes. She skied. But at 4 years old, she started to fall over, to bump into things. She pulled books in close, got stuck on words. She was finally diagnosed with Batten Disease, a rare genetic condition that robs normal children of everything. They end up bedridden, on a feeding tube, with seizures, and cognitively impaired. There is no cure.”

Vitarello, her husband, Alek, and Mila’s 3-year-old brother, Azlan, have worked tirelessly to raise awareness and funds for a gene therapy trial that seems promising for Mila and others diagnosed with Batten. Their initial fundraising push helped to fund the work leading up to the trial, but they now need $1 million more by September to get it scheduled.

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While siblings of children with Batten have a 25 percent chance of receiving a diagnosis of their own, Alzan, who posted a touching "thank you" video to supporters, was spared.