Fionn’s Story

Fionn had his first seizure when he was just 10 months old. Although this was a terrifying experience for all the family, we remained optimistic that it was a once off. Unfortunately, Fionn continued to have seizures often accompanied with fever and illness. By the time Fionn reached 13 months he had been put through a battery of tests and seizures, EEG’s lumbar punctures MRI’S and endless blood tests, until finally, he was diagnosed with Dravet Syndrome.

The next 5 years were spent mostly in and out of hospitals with Fionn. This was such an emotional time for my family, and particularly for Fionn’s brother Anthony, who worried for him so much. As a mother I tried to remain strong for my boys, Fionn’s smiles energy strength and sense of humour got us through those dark days.

I researched everything I could on Dravet Syndrome, and soon discovered the complexity of this condition, more notably how drug resistant it is. Our next difficult journey was to find the right blend of medication for him. Fionn suffered some terrible side effects to medication and I prayed endlessly for some respite from seizures. My prayers were answered and as of today and what felt like an endless road, we are 323 days seizure free

Whether we reach 365 days or not, we intend to throw him a big party and Fionn’s favorite food, CHOCOLATE CAKE, very soon.

I am in total AWE of my little boy every day, who has shown such bravery strength resilience, optimism love and laughter in all the pain he has had to go through. You Fionn and all the people with Dravet syndrome are truly life’s super heroes. Family is everything!!!