Living with CACNA1E
Yesterday the disability and special needs community of Australia had a small win. We were able to gain enough opposition so as to cancel the introduction of independent assessment which was to be implemented though out Australia by the Federal Government in an effort to cut cost in the NDIS. The National Disability Insurance Schem was set up over a... 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 →
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 →
I started to write this post during the last few hours of 2018 but was only able to finish it today. A lot has happened since then more challenges that I could have imagined. But I am thankful for the year 2018. There were moments where we felt lost and powerless, but there were also moments of perfect happiness. ... 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 →
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 hadn't had fed properly since she was born. This made her lose some of her birth weight and caused her to have very low blood sugar levels. This in turn also made it hard for her to regulate her body temperature. To help her, the on call doctors at the Neonatal Unit put her... Continue Reading →
Leaving our 4 day old daughter alone in hospital and coming home to an empty nursery felt like a bad dream. My sister and brother-in-law tried their best to be positive for Dinesh and me. But the only person who could make me smile was my nephew Thishane.m. I was finally able to speak with my... 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 