Mila’s Miracle Foundation is fighting to find a cure for seven-year-old Mila’s rare case of Batten disease
In many ways, Mila is just like any other seven-year-old girl. She smiles constantly and giggles uncontrollably as her mother plays make-believe with her. Today, they’re in a snow-covered field with Olaf (Mila’s favorite character from Frozen). Nearby, her little brother Azlan is running through the forest as a tiger.
But Mila is fighting every day for her life. Last fall she was diagnosed with Batten disease, a rare neurodegenerative disease that causes seizures, vision loss, cognitive impairment and early death. It is one of the most devastating diseases that exist. There’s no cure for Batten disease, but Mila’s family is determined to change that, through cutting-edge genetic treatments that may lead to a cure.
Mila’s symptoms developed slowly. Julia Vitarello, Mila’s mother, explains she started noticing that when she was three, Mila’s foot would turn inward, and her gait became more awkward.
Then, despite a vocabulary that had been advanced for her age, she began repeating herself, and she wasn’t able to find the right words to finish her thoughts. Soon, she started holding books much closer to her face to see what was on the page.
Vitarello and her husband, Alek Makovec, were told that Mila would grow out of it, that it was part of development. But Vitarello knew her daughter, and she knew that something wasn’t right. She went to doctor after doctor, searching for answers.
When doctors officially diagnosed Mila with Batten disease and Vitarello was told of the prognosis for her daughter, her world came crashing down.
Mila has already lost her sight, her speech and much of her ability to walk, but she can still smile and laugh, her personality shining through despite her physical limitations. To help Mila maintain her motor functions as well as she can, she has been practicing adaptive yoga techniques at Iyengar Yoga Center of Boulder. The techniques help Mila with muscle memory and help her body to relax.
“Despite losing these abilities, the thing that keeps us strong and keeps us fighting is that Mila is still so present and alert,” Vitarello says.
Mila’s family is determined to find a way for her, and other children suffering from rare diseases, to survive. They learned that genetic therapies were just recently proving to halt the progress of neurogenerative diseases. So Julia and Alek started Mila’s Miracle Foundation to find and fund paths to a cure. Thanks to their hard work and an impressive group of world-renowned scientists in Boston, a brand-new treatment that could stop, or even reverse, Mila’s disease is in sight for early 2018.
Wiping away tears, Vitarello says, “I had people tell me that Mila could have a bigger purpose in life than we ever imagined. As a mom, it’s impossible to think that your child’s purpose is more than just being a happy kid. But over the past year, I have realized that Mila’s life will have an enormous impact on so many.”
To help raise money for the trial to combat Mila’s cutting-edge treatment or to learn more, see the Saving Mila campaign page on Go Fund Me at GoFundMe.com/SavingMila or visit StopBatten.org.
“I had people tell me that Mila could have a bigger purpose in life than we ever imagined. As a mom, it’s impossible to think that your child’s purpose is more than just being a happy kid. But over the past year, I have realized that Mila’s life will have an enormous impact on so many.”