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Saving Mila — Time is Running Out!

$773,169 of $1.0M goal

Raised by 4,541 people in 15 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 experimental 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! 



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Snow arrived in Colorado this week. With it came the usual Fall virus that made its way through our house. Unfortunately, a cold that you and I might not even notice impacts Mila and kids like her in a much bigger way. Possible setbacks are always on our mind, but so far she has always bounced back. Staying positive!

We described the frozen trees and snow covered fields to Mila. And Azlan made his sister a bowl of fresh powdery snow breakfast. As a little kid, Mila used to love to scoop snow into a bowl and gobble it up with a spoon - maple syrup was a bonus.

Despite everyone having a cold and the freezing temperatures, we were all excited that wintery weather has arrived!

With snow and HOPE,
Julia, Alek, Mila + Azlan
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We are beyond excited about Mila's new bike! We first tried it in the hallways at the hospital in Boston, and now we have one of our very own!

Thank you Freedom Concepts for allowing Mila a taste of independence... and leg therapy! As we gently push her from behind and guide the bike, it makes her feel like she's riding alone. Something she doesn't often get to feel. And it works the rigidity in her legs at the same time. Win win!

A few kids in the neighborhood have said they want a bike just like Mila's. And they want the squishy tiger horn too. Cruising around our neighborhood was never this fun!

With pedalling & HOPE,
Julia, Alek, Mila & Azlan
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We just returned home from Boston - our first trip back for Mila’s ongoing treatment. We are grateful every day to have been given this incredible hope. And we never forget that YOU helped make this happen!

After battling a virus in her hip this summer that leveled her, Mila is finally back to herself. This past weekend we had some adventures around town and revisited Mila’s favorite climbing tree. We swung her leg over the branch and sat her up high, with Azlan hanging above her like a monkey. We are beyond happy to see her smile return!

Mila is a fighter. She amazes us every day.

With tree climbing and HOPE,
Julia, Alek, Mila + Azlan
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We say goodbye to the house where Mila and Azlan were born, where they took their first steps, spoke their first words. The house is empty now, but in my mind it's packed full of the memories that make up my life.

"When I walked into the house that day, I expected only tears and sadness. But when I left, I felt lighter. Reliving these moments made me cry, but it also brought smiles, even laughter, as I thought back to each one."

In my latest blog, I've shared the process I went through in separating the material loss of our house from the memories that will forever fill it.

My Blog - https://www.stopbatten.org/blog/

With memories and HOPE,
Julia, Alek, Mila + Azlan
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