Family trying to raise millions to fight daughter’s rare, deadly disease

This is an archived article and the information in the article may be outdated. Please look at the time stamp on the story to see when it was last updated.

BOULDER, Colo -- Two parents are racing against the clock to raise $4 million to start a clinical trial to find a cure for their daughter's rare and deadly disease.

Last month, Mila Makovec was diagnosed with Batten disease, a neurodegenerative disease. It's fatal and many children die before they reach their teens.

"We knew then it was much more serious than we expected, but I don't think we even knew then just how serious it was. We had never even heard of a disease that would cripple a child at such a young age," said Mila's mother Julia Vitarello.

When Mila was born, she was happy and healthy; she hit every milestone. Her parents said there was nothing that was cause for concern.

"She was advanced at age 2. She had an incredible memory. She spoke a little bit of Italian," said Alek Makovec, Mila's father.

However, as she started to get older, they noticed subtle changes.

Mila developed a slight stutter. They noticed sometimes she would hold the books a little too close to her face while she looked at them. Then, they noticed her feet started to turn slightly inward.

Eventually, Mila started having trouble walking. Around her fifth birthday, she lost the ability to see.

All the while, her parents took her to doctors all over the country, trying to find answers. No one could give them a diagnosis.

When Mila lost her sight, her parents decided to go to Children's Hospital Colorado and stay until they got an answer. Doctors determined she has Batten disease.

"Your gut tells you that something is wrong and we knew something was wrong, we absolutely knew it. We just didn't know how serious it was," Vitarello said.

The disease is hereditary. There is a 25 percent chance their 2-year-old boy Azlan also has the disease. Now the couple worries 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.

Now, 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.

However, now there is more hope that a cure is out there, and Vitarello and Makovec want to do everything they can to stop this disease from killing their daughter and destroying other families.

"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," Vitarello said.

The couple worries time is running out for Mila because the disease is known to progress quickly so they need to raise the money as soon as possible.

"We have to do everything we can as soon as possible to get a clinical trial up and running because they have proven to help or stop degeneration," Vitarello said.

Vitarello and Makovec said this disease always follows the same story. They hope with enough money for a clinical trial, they can find a cure.