Saving Mila — Time is Running Out!

$768,307 of $1.0M goal

Raised by 4,476 people in 10 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 over $1.5M to fund the science 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.

Our team of scientists and doctors are still working around the clock to perfect this new and experiemental genetic treatment to give Mila the very best chance. Mila's future is still unknown, but she is fighting hard and we have great hope.
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YOU can continue to help us fight for her life!
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. 
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Mila's story doesn't end here!

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 fund research and treatments for Batten Disease and other devastating  neurodegenerative conditions in children. But 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:

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Today

GoFundMe Blog Post
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This Mother’s Day, I have felt more proud and grateful than ever to be Mila and Azlan’s mom. I wouldn’t have evolved into the person I am today if it weren’t for my amazing kids.

And I feel so lucky to have learned what love, support and encouragement means from my own mom - allowing me to be the best mom possible to my children.

With pride and HOPE,
Julia, Alek, Mila + Azlan
#savingmila, #stopbatten, #mothersday
#savingmila, #stopbatten, #mothersday
#savingmila, #stopbatten, #mothersday
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After a long and frigid Boston winter, we have loved spending most of the past few weeks outside! It feels like we’re in a new city. We’ve gone on hikes and carried Mila in her stroller over mud and rocks. We’ve taken walks and felt the bark and smelled the blooming flowers. And we sit on our front porch every day and just listen to the symphony of birds.

We love watching Mila respond so well to the sounds, smells and textures of Spring!

With sunshine and HOPE,
Julia, Alek, Mila + Azlan
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We are beyond excited that Mila has been given the opportunity to attend the Perkins School for the Blind here in Boston for a few weeks. The teachers and therapists at the school fell in love with Mila and her story. They are dedicated to helping her communicate with and better understand the world around her. And we continue to hold hope that she may also regain some skills with the help of their therapists.

Perkins is known around the world as a unique school with a focus on children that are not only blind, but often face many other neurological symptoms as well. In Mila’s case, her inability to speak and her difficulties with motor control make it even harder for her to communicate. She has LOVED her first week and comes home each day beaming and vocalizing in her own words just how happy she is.

We are so grateful that Mila has been given this incredible opportunity. We hope to come away from the experience with a wealth of knowledge to help Mila at home and at school back in Colorado.

With gratitude and HOPE,
Julia, Alek, Mila + Azlan
#savingmila, #stopbatten, #perkinsschool
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For Mila, some days or weeks are great, and others can be harder. But we chose to concentrate our energy on the positive times. When Mila beams, she lights up even the darkest of rooms.

We wanted to share just one of these moments from this week - a reaction to a favorite story of hers since she was little about a red car named Herby and his adventures with his best friend Mila. We hope her laughter and joy of life light up your day.

With giggles and HOPE,
Julia, Alek, Mila + Azlan
#savingmila, #stopbatten, #brightlight
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$768,307 of $1.0M goal

Raised by 4,476 people in 10 months
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