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LMBRD2 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.
HISTORY OF A SUPERHERO
Oaklen
25 June 2023
Oaklen Johnson was born on June 25, 2023. He is an exceptionally happy child with a joyful disposition, always smiling and laughing, and rarely crying. He maintains strong eye contact and responds positively to social interactions. His vision and hearing are both intact and functioning well.
Developmental delays were first noticed when Oaklen was around 5 months old. After undergoing genetic testing, he was diagnosed with the LMBRD2 disorder. Seizure activity was detected around the same time, and he is continually being treated for both infantile spasms and epilepsy. Oaklen experiences significant global developmental delays. At 19 months, he has limited motor control, including poor head control, and is unable to sit, roll over, stand, or communicate verbally. Additionally, he faces feeding difficulties. A swallow study confirmed that he aspirates liquids, likely due to delayed brain signals affecting his swallowing reflex. As a result, he has a gastrostomy tube (G-tube) for feeding.
Despite Oaklen’s medical challenges, he is our “happy boy”. He will return your smile in an instant and loves his family without question. You won’t quickly forget his bright blue eyes and contagious smile.
“His strength is in his eyes”