Johan - Our brave little fighter

Meet Johan – Our Brave Little Fighter

Johan is a precious little boy whose life has been a fight from the very beginning.

At just 34 weeks of pregnancy, Johan had to be delivered by emergency C-section after his mother experienced a placental abruption. His tiny lungs were not yet fully developed, and he needed immediate medical intervention to help him breathe. During those critical first moments of his life, his heart stopped beating twice. He also suffered bleeding and clotting on his brain, leaving him with significant challenges to overcome.

After spending time in hospital, Johan was finally able to come home. Our family was filled with hope as we watched him grow and reach his early milestones. But our joy was short-lived.

Johan was later diagnosed with infantile spasms, a rare and severe form of epilepsy. An EEG confirmed that his brain activity was severely abnormal, showing continuous high-voltage, chaotic and disorganised brain activity with multifocal independent spikes. The findings were consistent with hypsarrhythmiaRead More