Living with CACNA1E
In a world where everything is geared towards instant gratification and created to glorify the power of man, we tend to forget how fragile and complex life is. With a snap of a finger our whole world can turn upside down. This week we sadly lost a little girl just like Diyanna. Her little body... Continue Reading →
It has been a long time since I was able to write about our journey with Diyanna. 2019 was a big year for our family. It was the last year of our family as we knew it. Just like the year before 2019 started with a visit to the ED. Diyanna was having on again off again fevers... Continue Reading →
Winter 2018 was not the best for our princess. Two weeks after coming home from hospital and still recovering from pneumonia, we were back in the ED. This time she had caught a nasty viral infection which is as bad as influenza. The fact that she hadn't fully recovered from round one meant that her... Continue Reading →
The last few weeks of June 2018 have not been the best for our little princess as she was in hospital for viral pneumonia. From the start of our journey with Diyanna’s condition the doctors have been clear that we could loose her in two ways. The obvious one is that she will have a... Continue Reading →
Diyanna's Gene 