Florian’s Story

From Florian’s mom…

Florian is 14 years old and lives in Berlin, Germany. He is a boy with a very special story – and an everyday life that requires a great deal of strength and care.

At just ten months old, Florian was diagnosed with a rare genetic defect: a mutation in the TUBB4A gene. This diagnosis brings profound health challenges for him and his family. Florian lives with a global developmental delay, severe spasticity, and nystagmus (involuntary eye movements).

Because of his condition, Florian cannot speak, walk, or sit unsupported – and he also lacks head control. In his daily life, he relies around the clock on loving care and support.

Eating and drinking pose a particular hurdle: due to a severe swallowing disorder (dysphagia), Florian can only eat pureed food and drinks from a baby bottle. Since he currently weighs only 19 kilograms (about 42 lbs), an important medical step is coming up for him soon: he will receive a feeding tube to ensure he gets enough nutrients and energy safely, helping him gain strength.

Despite all these limitations, Florian shows us every single day what true courage and zest for life mean.