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 unable to walk before they die at a young age. We were told there is no cure, and that no clinical trials exist for Mila's variant of Batten... yet. But we also learned that experimental treatments for other variants are showing great promise, and that if we raise enough money for a new clinical trial, we could give children like Mila a chance at life.
WE NEED YOUR HELP NOW
Mila has lost her vision and much of her ability to walk and talk. But she is a fighter. We need your help now to start a new clinical trial and give children like Mila a second chance at life.
Mila's Miracle Foundation, Inc. is a 501(c)(3) nonprofit organization, with pending status. We are currently fundraising through our fiscal sponsor, Creative Visions Foundation, a 501(c)(3) nonprofit organization. All donations are tax-deductible.