My 9-year-old daughter Mila was given a death sentence
But we decided to fight for her life, together with supporters from all over the world. Then something amazing happened
Mila could have been your child. She ran around playgrounds, ate ice cream by the pool and sang the ABCs like every other kid.
She learned to ski and climb rocks.But something changed.
Mila started tripping and falling and pulling her toys in close to her face. On her sixth birthday, she lost her vision. She had her first seizure. And said "mommy" for the last time. She was finally diagnosed with a 100% fatal condition, Batten disease
. My heart stopped. My body went limp.No cure. No treatments. No hope.
After a one-year race against time, Mila was given an unprecedented second chance at life.
She became the first person in the world to receive a drug tailored to just one person - called "milasen".
Suddenly, her rapid downward spiral seemed to come to a halt. Mila's symptom progression slowed, her quality of life improved. But she had lost a lot before she began her treatment and we still don’t know what Mila's future holds.
I can't help but ask myself "What would Mila's life look like if she was treated just a few years earlier?"
Together, we made milasen possible. Her story is changing medicine around the world. Now, other children like Mila deserve the same chance before their time runs out.
We are working quickly and carefully with scientists and doctors who are EAGER to continue making these treatments happen. But they don't have the money to get going - these diseases are simply too rare to attract funding.
Please HELP US to give more Milas a chance at life!
YOU can help!
whatever you can. No donation is too small (tax-deductible)
on social media (#SavingMoreMilas)
this page - gofundme.com/savingmoremilas - to your family + friends.
WHERE YOUR MONEY IS GOING
Mila's Miracle Foundation, Inc. is a 501(c)(3) nonprofit organization. Our mission is to find and fund treatments for children with devastating neurological diseases, like Batten. Saving lives is expensive. Mila and other children like her deserve a second chance that recent genetic breakthroughs now offer. We CAN save children's lives together!Milasen is changing the landscape of drug development.
The work led by Dr. Yu and Boston Children's Hospital and funded by Mila's Miracle Foundation was recently published in the New England Journal of Medicine
accompanied by an important editorial
written by Janet Woodcock and Peter Marks from the FDA. Since then, Mila's story has been featured in over 100 articles
in 25 countries - including The New York Times
, Science Magazine
, MIT Technology Review
, NIH Director’s Blog
and the BBC