Living with CACNA1E
It has been a while since I have been able to write about Diyanna and I sincerely apologise for not being able to update as often as I should or could. They say when it rains, it pours, and it all came to a head last year when our worst nightmare was realised. In May 2021... Continue Reading →
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 →
The past few months has been a mixed bag of events. From the height of celebrating Diyanna’s 6th birthday, a long overdue family trip, to the lowest point where Diyanna was in hospital. Celebrating Diyanna's 6th Birthday Dinesh and I have always tried our best to ensure that we keep her safe. The lockdowns, restrictions, social distancing protocols, mask... Continue Reading →
The past few months have been extremely hard for Diyanna. I will post a blog about the last few months soon but first I want to share some wonderful news we received on Friday afternoon. Diyanna has officially been diagnosed as having a variant of the gene CACNA1E mutation. This is the 1st step in... Continue Reading →
The joy I felt this morning cannot be described. We got through another year! She is three! A milestone which we were told might never come to pass. But here we are celebrating an amazing achievement. She is a fighter. And we will fight with her all the way and one day we will say... Continue Reading →
Diyanna's Gene 