Saving More Milas

When my daughter Mila was 6-years-old, she 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 ultimately we were not in time for Mila, and her big beautiful spirit flew away when she was just ten years old.

I can't help but ask myself "What would Mila's life look like if she was treated just a few years earlier or perhaps at birth?"

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 to create an entirely new treatment path for individualized medicines that Mila pioneered to help solve the global health crisis of millions of sick and dying children with genetic diseases. 

Please HELP US move from Mila to Millions, giving children a chance at life!

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YOU can help!

1) GIVE whatever you can. No donation is too small (tax-deductible)

2) SHARE on social media (#MilaToMillions)

3) EMAIL 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 first 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 28 countries - including The New York Times , Science Magazine , The Economist , STAT , MIT Technology Review , NIH Director’s Blog and the BBC .