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Saving Mila — Time is Running Out!

$778,735 of $1.0M goal

Raised by 4,609 people in 17 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 for one year, it seems unreal that we are telling you 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...




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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Mila's story continues to give hope to children with many other rare genetic diseases. One of these is Angelman syndrome - kids born with AS have difficulty suckling and eating, gastrointestinal issues, delayed crawling and babbling, balance and motor impairment, and seizures. Life for these kids and their families is far from easy. But a treatment like Mila's is in the pipeline and offers enormous HOPE!

It was an honor to speak this past weekend at the annual 1500 person gala organized by the Foundation for Angelman Syndrome Therapeutics. I was humbled by the impact Mila's story had on their community.

And wasn't expecting to follow actor Colin Farrell on stage!

With respect and HOPE,
Julia - Mila and Azlan’s mommy
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I was humbled to be invited to speak last week, together with Dr. Yu, at the 10th Anniversary of the Manton Center for Orphan Disease Research within Boston Children’s Hospital.

“Orphan Diseases”, like Batten, are those that are too small to catch the attention of pharmaceutical companies, and therefore are left on their own, with no resources to develop desperately needed treatments. While they are rare, millions of people in the US alone suffer from these diseases. And many are children like Mila.

Mila’s Miracle Foundation is working alongside Boston Children’s Hospital and the Manton Center to change that. Mila’s story was highlighted in the video below to represent the exciting turning point happening right now in genetic disease.

Thank YOU for helping Mila which in turn is helping so many more...

With admiration and HOPE,
Julia, Alek, Mila + Azlan
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This holiday season, we are feeling so incredibly grateful to YOU for allowing Mila the hope she has today.

As I write this, Mila is receiving the latest dose of her treatment here in Boston. Please close your eyes and imagine Mila’s drug being easily and safely absorbed by her brain.

Boston Children’s Hospital put together the short animation below on how Mila’s drug - which was named “milasen” - works. We hope it helps explain the incredible treatment that Mila is receiving - thanks to YOU!

With enormous gratitude and HOPE,
Julia, Alek, Mila + Azlan
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Today Mila turned 8 years old! We celebrated with stories and songs with some of her favorite friends, and a delicious cake made by Azlan. Unfortunately, it wasn’t one of her more alert days, but we got some great smiles.

I hope your heart warms up as much as ours did when you watch Mila’s friend Chloe read her the birthday card she made her.

With birthday cake and HOPE,
Julia, Alek, Mila + Azlan
+ Read More
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$778,735 of $1.0M goal

Raised by 4,609 people in 17 months
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