OUR CHILDREN'S STORIES

Karolina and Miriam

Julie

A story of two smiling twins

Our smiling sunshines Karolina and Miriam, identical twins, will celebrate their beautiful 16th birthday in May. Since birth, they have suffered from cerebral palsy, epilepsy, moderate hearing loss and other associated diseases. They were diagnosed with SPATA5 at ten years old. SPATA5 affects everything in their lives.

Full story (czech)

The story of the little girl Julie

Julie was born twelve years ago. Around the eighth month, her development stopped, she stopped sleeping, she cried all day and night, she suffered from severe abdominal pain. At the age of two, she was diagnosed with epilepsy after having almost constant epileptic seizures that were destroying her brain. She was diagnosed with moderate hearing loss. Despite all our efforts, she remains mentally at the level of a ten-month-old child. She cannot speak and does not understand spoken language. It was not until the age of nine that we discovered the cause of her condition and she was diagnosed with the genetic syndrome SPATA5.

Full story (czech)