Bonne Chance Charlie Gard

Since I became aware of Charlie Gard's story I have thought often about the poor little boy, his parents and their fight to keep him alive to allow him to be flown to the US for treatment of his incredibly rare condition.

When our Ben lay desperately ill in hospital on life support systems, fueled by a cocktail of drugs at 5 days old all I could think was that I would do anything, give everything for him to survive.

His prognosis according to the consultant was not good and I vividly remember walking out of the ICU at Nepean Hospital in western Sydney with Catherine into the oven that was a scorching 44 C day wondering whether it would be the last time we would see him alive. Torn between staying at his bedside 24/7 and spending time with our 18 month old son, we decided that there was nothing more we could do for him that day and that Eddie deserved both of our attention for a few hours before we returned to our vigil alongside Ben's ICU capsule the next day.

When we returned we were asked if we were happy for an experimental drug to be flown in from Philadelphia and given to Ben. Mind? I was humbled by the lengths that the health service were prepared to go to in their attempt to save our gorgeous son. An ethics committee meeting was held on a Sunday and by Monday the drugs had arrived from the US and were administered.

Ben survived and today lives a rich life , rewarding all of those around him with his cheery, empathetic nature.

It is overwhelming to witness the outpouring for Charlie - £1.3 million raised in a matter of days to fund his journey to the US for treatment.

Bonne Chance Charlie - with judgement due in the High Court shortly I wish you well and look forward to your story of miraculous survival.

#CharlieGard