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:

Luka

19/03/2021

LMBRD2 ASSOCIATION

History of a SuperHero

Luka was born on the 19th March 2021. He was born by caesarean section on the calculated date. He had completely normal values, body length 54cm, head circumference 35 cm, body weight 4210 g. He seemed completely normal for the first six months. He was a very satisfied little baby, but physically not very active either. He preferred to observe. Then the physical development steps were absent, or came greatly delayed. He could only turn on his stomach at 7 months. Back on the back, only at ten months. After that, nothing happened for a very long time.

At 15 months, he slowly began to seal. He did everything only with the arms and intensified over the right arm. Through the physiotherapy according to Vojta, progress was slowly made.
At 18 months he was able to stay seated, at 24 months he came to the seat independently. The sealing became steadily better and faster, the legs were now even added sporadically.
At 32 months, Luka began to get into the four-foot position, and at the age of three he began to crawl.
The process and development is lengthy. At first it’s only a few steps, but then the new one becomes more and more. He now crawls super fast and safe, can crawl up a staircase, but not yet down again. In the stand trainer we practice the standing every day. This is supposed to encourage him to get into the upright position.

His cognitive abilities also correspond to his level of development. He develops everything in the right order, only very delayed. The distance is getting bigger and bigger. At the moment he likes to look at books Mom, Dad, Car and Wauwau are his current sounds. He loves to listen to music. Even though he is still predominantly non-verbal, he communicates with others through facial expressions and his laughter. He points to things or makes himself noticeable through sounds. He understands a lot, his approval is usually a smile, and if he doesn’t like something, he pushes it away or reinforces his statement with a sound.

He laughs a lot, he has a really contagious laugh. He brings so much joy into our lives. He plays a lot with his siblings and other children from the neighborhood or in kindergarten. He never noticed his legs before. To this day, his perception has expanded to the lower leg. His feet are not yet in his perception, but he slowly starts playing with them when he is lying on the changing table. We hope that he will finally manage to stand on his feet at the age of four. We dream of learning to walk. But everything is possible

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
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