Ugh. Just ugh. I have numerous times written about the bureaucratic nightmare living with a chronically ill child is and the endless battles we have faced in the last two years to ensure that Freya's needs are properly met, but the events of last couple of months take - like people far politer than me [...]

The little lady's birthday is nearly upon us.  Freya spent last night at hospital having a sleep study to check up how she is doing respiratory-wise. It's a bit of time since our admission at the respiratory wards and everyone was impressed how well Freya is doing - with the big two looming in front of [...]

"Don't be afraid of different. Some of the most beautiful things in the world are different." A nurse who looked after Freya when she was a very ill baby In the grand casino of life my partner and I hit the jackpot of rare odds. Whereas statistics indicate that about 3% of babies are born with [...]

I have been thinking about being a parent as a role  parenthood as a concept a lot lately. Firstly, as it was mother's day here in the UK quite recently and secondly, as my own parents are visiting after months of having been on a flying ban due to my mum having had a hip replacement. [...]

It's December and I am cautiously getting in the Christmas mood. We have had a good autumn, with just one emergency admission and managing little lady and winter bugs at home. But I do not want to get too excited, as I know that any little blip can land us at hospital over the holidays. [...]

"We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face...we must do that which we think we cannot" Eleanor Roosevelt It was raining when we walked up Southampton Row. I glanced to my right and saw the work “Casino” in big blue letters. I [...]