Julia Vitarello is fundraising
Saving Júlia & kids with Batten CLN7!
In 2017, my outgoing, seemingly healthy daughter Mila was given a death sentence - we were told she had Batten CLN7 disease, a fatal degenerative condition affecting only 100 known children worldwide. In a race against time alongside scientists and families, we started a foundation, raised money and began work on a Gene Therapy for children with this disease which offered great hope.
This treatment finally made it to children with CLN7, but only after Mila died in 2021. The Gene Therapy showed great promise, but just one year later the trial was halted because the funding ran out.
Now, the children who follow Mila have no hope, despite a treatment being available. I refuse to watch other children like her die when money is the only barrier.
One of these children is 4-year-old Júlia Pontes Domingues from Brazil. Like Mila at that age, Júlia is thriving, but her time is quickly running out and when she turns 5, she will likely be robbed of her vision, her last words and her ability to walk. The cliff is coming...
We want to do our part to help the enormous efforts underway to get the CLN7 Gene Therapy trial back up and running immediately before it's too late.
Everything is in place - we are racing to raise the remaining $500K of the $3 Million needed for the trial to continue.
Time is running out for Júlia and children like her.
Please HELP US raise $500K by September 15 to give children like Mila and Júlia a second chance at life.
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YOU can help save children's lives!
1) GIVE whatever you can. No donation is too small (tax-deductible)
2) SHARE on social media
3) EMAIL this page - https://www.gofundme.com/f/saving-Julia-and-kids-with-batten-CLN7 - to your family + friends.
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Mila's Miracle Foundation, Inc.
THE MISSION OF MILA'S MIRACLE FOUNDATION IS TO FIND AND FUND PATHS TO A CURE FOR BATTEN AND OTHER LIFE-THREATENING NEUROLOGICAL DISORDERS IN CHILDREN, WITH A PARTICULAR FOCUS ON OPENING UP THE NEW FIELD OF INDIVIDUALIZED MEDICINES, WHICH MILA PIONEERED.
- A
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