Lars and Jonas Borek are brothers living in Hamburg. Aged 19 and 12, both suffer from Fragile X Syndrome, a rare disease that leads to autistic behavior patterns.
They have trouble filtering experiences and suffer from anxiety. Their mother descibed their condition as like playing the piano “and the key doesn’t stop when you let it go.”
There’s a “chaos of sounds” in their minds.
Both of them will need life-long care. But that’s not the only problem the family faces. The pharma industry has so far shown little interest in investing in possible treatments for Fragile X.