Mila's Story
MILA'S LIFE BEGAN WITH JOY...
November 5, 2010. Mila came into this world pink and perfectly healthy. It was the best day of our lives. She nursed until she was two, slept like a little rock, ate like a champ and met every milestone before her peers. She walked at one and was talking up a storm by 18 months.
We would tell her wild tales of mushroom fairies and talking animals and she would finish our stories in excitement. Mila was a talker, a singer, a go-getter. No snow was too deep to hike in, no rock too tall to climb, no field of grass too thick to run barefoot through. She came into the world strong and radiant and grew up to be an energetic, giggly little girl.
THEN, THINGS CHANGED
At three, 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 backwards and move her feet in an unusual pit-patter.
We kept asking ourselves what was happening to our daughter? We had her assessed by neurologists, ophthalmologists, optometrists, orthopedists, and speech, vision, occupational, and physical therapists. Some therapies seemed to help, but the peaks didn't get higher and the improvements wore off. No one could pinpoint what was wrong. When she turned six, everything got precipitously worse over a matter of weeks.
Finally, a diagnosis
In desperation, we brought Mila to Children’s Hospital Colorado in hopes they would not release her until they figured out what was wrong. After a long week of many tests, the doctors diagnosed Mila with Batten Disease. Our hearts stopped. Our bodies went limp.
We learned Batten is a neurodegenerative disease which 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.
WE NEED YOUR HELP NOW
Mila was given an unprecedented second chance at life through the first-ever truly personal medicine, Milasen. Now we need your help to pave this path for many more children like Mila across hundreds of rare diseases.
Mila's Miracle Foundation, Inc. is a 501(c)(3) nonprofit organization. All donations are tax-deductible.