Dana met Mila at a speech therapy class and they became close friends because of their stutter. With time, Dana improved but Mila only got worse.
A little girl has taught the world what it actually means to selflessly help a friend out when they need it, and she's proven that age is just a number if you're determined to get results. Dana went to speech therapy in 2015 where she met Mila. They soon became friends, and while Dana got better, she noticed that Mila wasn't. In 2017, Dana, who was then 7 years old, decided to help her friend Mila out because she saw she needed medical help. We became good friends because we both had a stutter. We worked really hard at therapy. After a year, I got better and my stutter went away. But Mila’s didn’t. Mila kept getting worse, shared Dana, via GoFundMe.
A few months later, Dana found out that her friend was diagnosed with a rare condition called Batten Disease. She knew that if Mila wasn't treated for it, her condition would get worst and she wouldn't make it. I feel heartbroken for Mila and her family, especially her little brother, Azlan. He is almost the same age as my brother, Carson. I imagine how sad Carson would be if I got sick and was going to die. Dana then said that while there was a treatment that could potentially save her life, it was experimental, which meant her insurance wouldn't cover it. This also meant that the treatment would be extremely expensive as well.
Dana realized that Mila and her family needed financial support and so she baked cookies with her mom's help and sold them around his neighborhood. So, we baked a bunch of cookies, loaded them and my brother in a red wagon, and sold the cookies all over our neighborhood. We started in the summer, and since then, we have sold so many cookies! We even started shipping cookies across the country because so many people want to help Mila. Her first goal was to raise $1000, and she managed that. Dana eventually managed to raise $56,664, way more than her $40,000 target.
Dana now runs a business called Cookies4Cure. She bakes and sells cookies to raise money for research: Cookies4Cures is an organization run by kids for kids. My friends and I raise money to fund research into rare pediatric diseases. When a kid has a rare disease, sometimes there isn’t any medicine or treatment. This is what happened to my friend Mila, who has Batten, and my friend Ollie, who has PANS. When there isn’t a cure, the only thing to do is to help scientists do research to find one. We fund research because, for kids with rare diseases… RESEARCH IS HOPE! According to Mila's Medical Foundation, Mila was just like any toddler in the beginning: She came into the world strong and radiant and grew up to be an energetic, giggly little girl.
When she turned three, her parents noticed that something was wrong: We noticed she was getting stuck on words and one foot was slightly turned inward. When she was four, she started to pull books in close to her face. At five, she would occasionally fall backward and move her feet in an unusual pit-patter. By six, she was completely blind, reports Stat. That's when they knew something was seriously wrong because this had escalated beyond previous diagnoses from doctors. The devastated parents, Julia Vitarello and Alek Makovec, found out about her condition.
Batten is a neurodegenerative disease that leaves children blind, cognitively impaired, and bed-ridden before they die at a young age. We were told there is no cure for Batten... yet. But we also learned that very recent genetic therapies were showing great promise. So we started a foundation and set out on a race against time to find and fund a path to a cure for Mila, in hopes of paving a new path for hundreds of other rare diseases. Usually, it takes years to develop a drug, but Mila received a drug that was tailor-made for a single patient. The drug was fittingly named "Milasen."
The family shared: In January, 2018, Mila became the first person in the world to receive a drug customized for just one person. It was named Milasen. Although Mila had lost a lot before she began treatment, she was given an unprecedented second shot at life. We still don’t know what Mila’s future holds, but we do know that her fight is giving enormous hope to so many more across hundreds of rare diseases that otherwise would have no chance. They are now looking to find a cure and are also seeking donations to give other kids like Mila a second chance at life. Now we need your help to pave this path for many more children like Mila across hundreds of rare diseases. You can donate` here.