NON-PROFIT ASSOCIATION

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Our SuperHeroes

The Unseen Warriors

 

In a world where strength is often measured in power and speed, our greatest heroes show resilience in ways most cannot see. They fight battles not on grand stages, but in everyday moments—against challenges that most will never face.

Every child affected by the LMBRD2 gene mutation is a true hero. Their daily lives are a battle, an adventure filled with challenges where every small progress is a victory, and every smile is a beacon of light.

They face the invisible, the unknown, with a strength beyond imagination. Behind their eyes lies an unbreakable determination, a resilience that commands admiration. They teach us to see the world differently, to cherish every moment, and to redefine what true courage really means.

AND HERE IS:

Violet

01/12/2023

little_violet

LMBRD2 ASSOCIATION

History of a SuperHero

Violet was born on December 1, 2023 and quickly became the light of the family. Violet’s glowing smile, contagious belly laughs and unwavering joy is evident in everything she does. She is a kind-hearted, energetic girl with just a little bit of sass.  At 4 months, concerns with Violet’s development began to arise. Nystagmus in her eyes, microcephaly, and muscle tone irregularities lead to various doctor appointments. Ultimately, through extensive genetic testing, at 7 months, Violet was diagnosed with a genetic mutation of her LMBRD2 gene.

When Violet was one year old, she was unable to sit, stand or crawl independently, and did not roll consistently. Even though this mutation has made significant impacts on Violet’s development, she continues to work hard on a daily basis with various therapies to improve her quality of life.

Despite her young age, Violet has proved to be a strong willed little girl with an unbelievable amount of determination and resilience. She is a huge “foodie” who will try, and probably devour, any new food given to her. Her favorite activity is dancing in her parent’s arms as they sing together throughout the house.  She is adored by all who have the pleasure of getting to know her.

And we do have many other all over the world.


Our heroes don’t wear capes, but they have wings—the wings of love, hope, and perseverance. Through them, we learn an essential truth: the greatest battles are not fought with weapons but with the heart.

We are proud to stand by them, to share their stories, and to make their voices heard. Because every child here is a symbol of strength, a spark of hope, a hero in their own right.


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LMBRD2 gene mutation
USA
4 Cases Report
EUROPE
10 Cases Report
ASIA
1 Case Report