Saving Julia - Time is Running Out

In January 2025, we set out on a mission to find a cure for Julia, who was diagnosed with Batten Disease Type 7 (CLN7) - a rare and fatal disorder that steals children's abilities and, eventually, their lives.

After fighting day and night for Julia’s life, it feels UNREAL to know that she may now have access to an EXPERIMENTAL TREATMENT THAT COULD SAVE HER LIFE.

This is only possible thanks to the generosity and kindness of thousands of people around the world. But the story doesn’t end here...

With this opportunity comes a great responsibility. We are determined to help many more children like Julia. We won’t stop until we succeed. So please, stay with us, follow Julinha’s journey, and help us change the future for children like her.

THERE’S NO OTHER WAY TO SAY THIS - MY DAUGHTER JULIA IS DYING.

Every night, I lie by her side as she sleeps, and my heart bleeds. My face burns from the tears.

JULIA COULD BE YOUR CHILD. She loves to play, sing, and run. But at just 3 years old, she started falling, struggling to speak, and losing control over simple things like going to the bathroom. Then came the devastating diagnosis: Batten Disease Type 7 (CLN7), a rare and fatal genetic disorder that robs children of everything.

They end up bedridden, unable to see, speak, or move. They require feeding tubes, suffer from relentless seizures, and gradually lose cognitive function. There is no cure... yet.

We were given zero hope. But we discovered that scientists can now STOP the progression of genetic diseases like CLN7. So, we fought day and night and raised nearly $3 MILLION to fund this treatment with Elpida Therapeutics (California, USA).

Our tireless efforts and YOUR INCREDIBLE SUPPORT have brought us here. Julia may now receive a NEW AND POTENTIALLY LIFE-SAVING TREATMENT. It seems unreal.

If everything goes as planned, Julia treatment could not only save her life but also the lives of 6 to 8 other children.

Since this treatment started being tested, the results have been promising. Some children have shown improvements in seizures, posture, swallowing, and, most importantly, cognitive awareness and responsiveness. They are still smiling. They are still laughing.

But Julia still faces many challenges. CLN7 has already taken so much from her… While we fight hard to restore what has been lost, we are also working to turn this treatment into HOPE for many more children.

PLEASE HELP US PAVE A NEW PATH TO SAVE MORE CHILDREN LIKE JULIA!

ABOUT ELPIDA THERAPEUTICS

Elpida Therapeutics (California, USA), in partnership with the University of Texas Southwestern Medical Center, has developed a promising experimental treatment for CLN7. This treatment has the potential to halt disease progression, giving Julinha and other children a real chance at life.

Press:

https://globalgenes.org/raredaily/from-one-to-many/

Oficial website:

https://www.salveajulinha.com/en/

With gratitude,

Alan & Fernanda.

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