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Charity steps up to help family raise $4 million to find cure for daughter’s deadly disease

BOULDER, Colo. -- A local charity event has decided to donate the proceeds from this year's event to a family's campaign to raise $4 million to start a clinical trial for their daughter's deadly disease.

The FOX31 Problem Solvers highlighted Mila Makovec's story in January. She was diagnosed with Batten disease, a neurodegenerative disease, in December.

It's fatal and many children die before they reach their teens.

The disease is hereditary. There is a 25 percent chance Mila's 2-year-old brother Azlan also has the disease. Now their parents, Julia Vitarello and Alek Makovec, worry their family of four will turn into a family of two.

"All I wanted to be was a mom my whole life. I have a thought 100 times a day that I may not be a mom, and it's the one thing I wanted in my life," Vitarello said.

Vitarello and Makovec are trying to raise $4 million for a clinical trial. Five years ago, doctors said there wasn't much hope for people with Batten disease. Now, doctors believe finding a cure is a possibility, but it takes time and research.

With $4 million, Mila's family will be able to start a clinical trial for her specific type of Batten disease.

"I guess I look at the situation as fate, God, whatever you want to call it, has a reason for everything and I think he just sat me in front of the TV and got my attention," said Bret Reynolds, who runs the Colorado Arts Circuit.

The charity event is a blend between a motorsport exhibition and an art exhibition. This year, its proceeds will focus on fighting Batten.

"It's amazing to see that smile on [Mila's] face with everything that she is going through at this point and how she can be a kid and if we can do something on our part to make that a little easier and help not just this family, but other families, it would be our pleasure to try and step out and bring awareness to something that maybe not a lot of people are aware of," Reynolds said.

"I was in tears when I received an email ... saying that this really nice stranger reached out to want to help Mila and help our family and help other children that are facing Batten and donate a part of the proceeds of the event that he puts on," Vitarello said.

"I couldn't believe someone that doesn't know our family would reach out and feel like immediately a connection that they wanted to help our family."

While the fundraiser will help, it won't be enough to raise $4 million. Mila's family is also hosting charity events in addition to their online campaign to raise money for a clinical trial.