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Saving Mila — Time is Running Out!

$923,724 of $1.0M goal

Raised by 4,824 people in 23 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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A big thanks to Vicky Dorvee at our local Left Hand Valley Courier for continuing to cover Mila's story - this time at the GoldLab Symposium. Vicky has followed Mila and our family so closely and carefully over the past few years and she continues to impress me with how much she has learned about Batten, rare disease, and genetic treatments!

Link to the full article below:
http://www.lhvc.com/news/mila-s-miracle-featured-at-cu-s-goldlab-symposium/article_b8027464-82db-11e9-9935-eb8bd600b312.html?fbclid=IwAR02Ax-dVvmHG6I6BK105SzbPJwrcqYWr5VS-zON_k92TeVYY5248LnIsgU
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My little Batten warrior with our devoted friend and helper, Gretchen.

This week, in honor of International Batten Disease Awareness Day, we stand up to remind the world of this horrible disease that takes over before a child is even born. It rips away childhood, and then life. It tears apart families. But it also reminds us to live in the now and appreciate even the tiniest moments of great joy.

Here's to a brighter future full of hope for Batten warriors like Mila and those that will follow her...

#savingmila #stopbatten #milasmiracle #BattenDay2019
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Thank you GoldLab Symposium and Larry Gold for offering me the unique opportunity to tell Mila’s story in my own town of Boulder, Colorado. Dr. Yu and I gave the final presentation at the two-day GoldLab Symposium in front of an audience of scientists, physicians and big thinkers from around the world. The bonus was looking out and spotting many of my local friends in the crowd smiling back at me!

The excitement from the audience around Mila’s Miracle Foundation’s work so far and our mission to turn Mila’s story into an entirely new treatment path was humbling and encouraging.

GoldLab captured the entire presentation on video, as Tim and I went back and forth stitching together our journey over the last few years. I hope you’ll find the time to check out the link below - the first half is our presentation.

https://www.youtube.com/watch?v=Tqgu-ka3Z3A&feature=youtu.be
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Back at Boston Children's Hospital for another treatment. One more dose, one more reason for hope! We even managed to pull it off without anesthesia this time, a huge accomplishment! All thanks to our amazingly precise Dr and to Frozen for keeping Mila perfectly still. Grandma and granddaddy were there to snuggle afterwards!
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$923,724 of $1.0M goal

Raised by 4,824 people in 23 months
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