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When Mila Makovec was born six years ago, her parents were thrilled. Their first daughter was a happy, healthy little girl with bundles of energy. She hit every single growth milestone on time, if not early, and she showed enthusiasm in trying new things every day.
But when she turned three, around the time her younger brother, Azlan, was born, things began to change.
Mila, who had been such an avid talker, was beginning to stutter. She held her books a little too close to her face to read, and one of her feet began to turn inward.
Her parents couldn’t understand what was wrong, so they took their little girl to doctors all across the country.
Mother, Julia, recalled the frustrating process, “At least one doctor said, ‘Relax, your daughter is fine.’”
But Mila wasn’t fine. And there was no longer any way to look past it when she officially lost her sight.
Mila’s father, Alek, decided then – the family wasn’t going to leave the hospital until a doctor was able to give them a diagnosis.
After many tests, the Makovec family finally received the tragic news: Mila was diagnosed with Batten disease, a genetic, fatal neurodegenerative disease that begins in children and causes them to slowly, but surely, lose their ability to function.
Because the disease is so rare, doctors have no idea how to treat it and can only hope that they will be able to develop treatment methods as Mila grows. But they’re incredibly uncertain about the prospects.
To make matters worse for the family, because Batten disease is genetically inherited, there is also a 25% chance that Azlan could also develop the condition in the coming years.
In the face of all this, the family is trying to remain strong. "We want to play our role. We want to help our daughter. We want to help or son if that's what it comes down to and we want to be able to help other families,” Julia said.
If you can, please donate to the family’s fundraiser here. Not only will it help Mila, but it will also help other children suffering from this currently incurable disease.
You can watch an interview of Mila’s family here:
