7.0k
7.0k
122

Saving Mila — Time is Running Out!

$912,196 of $1.0M goal

Raised by 4,775 people in 19 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
+ Read More
What began as a race to save Mila’s life, has turned into an opportunity to pave an entirely new treatment path for children with fatal genetic diseases. I have been humbled to be invited to speak at scientific meetings and conferences around the country. Together with Dr. Timothy Yu - the scientist and neurologist who pioneered Mila’s incredible treatment - we tell Mila’s story.

On February 28th - Rare Disease Day - we will be presenting Mila’s story at the Broad Institute of MIT and Harvard in Boston. The event is open to the public and free, but seats are limited. If you’re interested, the registration link is below. We would love you to be there!

https://www.eventbrite.com/e/focus-on-rare-disease-decoding-genomes-unlocking-therapies-tickets-54951658891

With ambition and HOPE,
Julia - Mila and Azlan’s mommy
+ Read More
Two years ago, when Mila was diagnosed with Batten disease, I felt completely alone. We were told she had an ultra-rare variant of an already rare disease. I scoured the internet for her “CLN7” type and barely found anything. I came across a short chart of reported cases world-wide, a few living children and finally a scientist who wanted to help.

Well before working on the treatment Mila is enrolled in, our foundation initiated a separate gene therapy for Mila’s type of Batten. This would be a trial that any child with CLN7 could be eligible for. In order to make this trial happen, a Natural History Study was just launched and published on the NIH’s site. The goal is to gather the necessary data from kids like Mila to help better understand the disease and help with treatments.

This study finally puts CLN7 on the map! Our hope is that the next family to follow in our footsteps will feel less alone when they are given this diagnosis. One more important step toward our goal to #stopbatten.

https://clinicaltrials.gov/ct2/show/NCT03822650?cond=cln5&rank=1

With direction and HOPE,
Julia - Mila and Azlan’s mommy
+ Read More
The last time I heard Mila say “mommy” was a year and a half ago. I lay in her bed at night, the lights out, listening to her tiny cracking voice push out the word “mommy”. It was her last word. Each time I recall this memory, I feel a tight band wrap around and around my heart, suffocating me.

In the past few weeks, we have ramped up our efforts to help Mila talk. She has been babbling more and more and the desire to say something radiates from her wide eyes. Occasionally, she says “Anna”, her favorite character from the movie Frozen. But recently, we’ve heard her say new words perfectly in context - “hi”, “gloves”, “owl”. We see her tongue moving to the top of her mouth and her lips changing shape.

Last week, as her devoted therapist Laura went back over what happened that day, Mila repeated what she heard and blurted out “mom”.

In disbelief, I told a friend a few days later and just then Mila repeated it again...

With so much excitement and HOPE,
Julia - Mila and Azlan’s mommy
+ Read More
We raised over $30K in the last two weeks! And it was enough to receive our $100,000 MATCH from an incredibly generous family in Boulder, Colorado!

Thank YOU for helping us pave a new treatment path for more children like Mila. We're on a mission and we're making headway.

With gratitude and HOPE,
Julia - Mila and Azlan's mommy
+ Read More
Read a Previous Update

$912,196 of $1.0M goal

Raised by 4,775 people in 19 months
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
MS
$10
Michael Smith
2 days ago
JK
$100
Jessie Kennedy
5 days ago
JB
$100
Jeff Blattner
6 days ago
RC
$30
Roger Cripps
7 days ago
SP
$200
Sevana Petrosian
7 days ago
AA
$15
anonymous anonymous
9 days ago
JG
$50
jessica gregory
9 days ago
MS
$20
Megan Smith
10 days ago
FF
$50
Farrah Franquiz
10 days ago
CM
$100
Christina Maxin
13 days ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.