CACNA1E

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

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 →

Pneumonia

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 →

NICU

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 →

Day 2..

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 →

She is Three!

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 →

The beginning

10th of June 2015 was the happiest day of our lives. The moment we had been waiting for. But in less than 48 hours our world started falling part. Looking back the warning signs were there even before Diyanna's birth. I wish I knew then what I know now. During the last trimester of a... Continue Reading →

Princess Diyanna

Diyanna’s Gene is the story of our daughter Diyanna and her battle against a rare genetic mutation known as CACNA1E. It’s about the little rays of sunshine we see in what has been a very gloomy time in all of our lives. This mutation is so rare that there is very little support for me... Continue Reading →

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