The story of Fabienne
To all the ones writing here, or not writing because of an obvious lack of time or energy, I say ‘you are super everyday heroes
We try our best to accompany our son Tom who is 9 years old and is also a super hero – Dravet syndrome makes our family life quite… different and.. crazy and.. exhausting, and transforms every step we take for and with Tom into an incredible struggle! The terrible fits, the cognitive and motor issues etc have no mercy for Tom.. Still we fight back -at least we try-with humour, and lots of love… and lets not forget this : we do not surrender, NEVER to be afraid is not an option,! To enjoy Tom’s wonderful capacity to shine and share his love is just something unbelievable and,,,RARE?? Have a wonderful rare disease day (from Spain where we live, being Belgian) fabienne and michell