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Saving Mila — Time is Running Out!

$930,126 of $1.0M goal

Raised by 4,856 people in 25 months
In January 2017, we set out on a mission to find a cure for our daughter Mila’s devastating condition, Batten Disease— a disorder that rips abilities, and then life, away from children. After fighting for Mila's life day and night, it seems unreal that Mila has started receiving an experimental and potentially LIFE-SAVING TREATMENT.  This would not have been possible without the help of thousands of incredibly kind and generous people around the world. But the story doesn't end here...

With this incredibly opportunity comes responsibility. We are determined to help the many more Milas that will follow. We won't stop until we get there. So please stick with us, follow Mila's story and help us change the prognosis forever for children like Mila. 




There’s no other way to put it—my 7-year-old daughter, Mila, is dying. I lie by her side every night when she sleeps and my heart bleeds. My face burns from the tears. 

Mila could be your child. She splashed in the pool, begged for chocolate ice cream, and sang her favorite songs. She rode bikes. She skied. But at 4 years old, she started to fall over, to bump into things. She pulled books in close, got stuck on words. She was finally diagnosed with Batten Disease, a rare fatal genetic condition that robs normal children of everything. They end up bedridden, on a feeding tube, with seizures, and cognitively impaired. There is no cure... yet.

We were given no hope. But we discovered that scientists are just now able to STOP and even REVERSE genetic diseases like Batten. So we fought day and night and have raised close to $3M to fund possible treatment paths and the necessary research that could lead to a cure.

Our tireless work and YOUR incredible support have paid off. Mila has started receiving a new and potentially LIFE-SAVING treatment. It seems unreal.

Since starting her treatment, Mila seems to be stable. She is showing some signs of improvement in her seizures, posture, swallowing, and most importantly alertness and responsiveness. She is still smiling. She is still laughing. So we continue to fight for her!

Mila still faces many challenges. Batten has taken so much from her. While we work hard to find ways to rehabilitate her, we are also working just as hard to turn Mila's treatment into a way of giving hope to children across many diseases. 

Please HELP US as we fight to clear a brand new treatment path for many more children like Mila!
_______________________________________

YOU can help pave a brand new path to saving children's lives!
1) GIVE whatever you can. No donation is too small (tax-deductible)
2) SHARE on social media (#SavingMila)
3) EMAIL this page - gofundme.com/savingmila - to your family + friends. 
_______________________________________


With gratitude,
Julia, Alek, Mila, and Azlan



















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 the chance that recent genetic breakthroughs now offer. We CAN save children's lives together! 



Recent press:

Science Magazine

Boston Globe/STAT 

Daily Mail 

Fox5 DC - Evening News
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Azlan's first day of Kindergarten! Especially emotional since we never saw this day come for Mila. Bitter sweet, as always -- but Azlan's excitement and happiness keep my candle burning!
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We were honored to have Mila’s story included in South Korea’s 700th anniversary news series -- "Mysteries of the Human Body" (생로병사의 비밀) -- which aired a few weeks ago across all of South Korea. KBS World flew to our home in Colorado to capture some of Mila’s life and to Dr. Yu's lab in Boston in hopes of inspiring their country to imagine a future of true precision medicine.

#savingmila #stopbatten #milasmiracle
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There’s something about hiking that helps me open up and talk more freely. Thank you Gene Gurkoff, the founder of Charity Miles, for coming out to Boulder and inviting me on yet another hike and podcast recording.

A lot has happened in Mila’s story since we recorded our first podcast for The Extra Mile two years ago this week. I now hear my own voice transitioning from a desperate fight for Mila to a fight for the many Milas that will benefit from everything she has endured. I hope you find time to listen in on your car ride to work.

https://apple.co/334mXb9

#savingmila #stopbatten #milasmiracle
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Thank you Chan Zuckerberg Initiative for launching the Rare as One project and helping push science and treatments for rare disease. Their video below, produced for them by Joanna Rudnick, does an amazing job at capturing the many emotions in this rare world I live in.

It seems so appropriate that I began writing our grant proposal for this project this week in Mila’s room at Boston Children's Hospital while at the same time helping feed her, change her clothes, go to the bathroom, read books and take her to the rooftop garden to hear the city sounds. Just another day in my life.

I am very grateful that Joanna is also producing a short documentary on Mila’s story coming this fall. My hope is that the world’s audience will be given a window into our life - what it’s like to be given the incredible possibility of a future, and with it the ups and downs of being the very first.

Check out the video below.

https://chanzuckerberg.com/story/rare-as-one-video/?fbclid=IwAR39XEQjmecj0fq9JuFA5UVmYSn4snitbT_h5JmPoyBzukuqmWQ4J9_UFk8
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$930,126 of $1.0M goal

Raised by 4,856 people in 25 months
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