Florijan (2021)

CACNA1E c.2104G>A p.Ala702Thr

We are from Croatia around Zagreb.  

Florijan is our third child.

Our other two kids are healthy.

Florijan is now 3 years old. Since he is 6 months old he has frequent epileptic attacks, and a little less attacks since we introduced a stronger dose of the drug he is taking. But unfortunately his lungs have been weaker for two years. He received oxygen and NIV (home ventilator).  He is stable until he gets a virus. In September 2023 he had adenovirus and almost lost his life. But now it's good and he is a happy child. Occasionally he is on oxygen.