Ten Weeks

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 Cost of Disability and the NDIS

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 →

We Battle On

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 →

Value for Money…

The slogan of Australia’s National Disability Insurance Agency, the organisation whose goal according to their website is to “support a better life for hundreds of thousands of Australians with a significant and permanent disability and their families and carers.”. Sounds good doesn’t it? But as always there is a catch. The "better life" that they... Continue Reading →

An Unexpected Year

2020 has been a unique year for everyone. For us it brought happiness we never knew and a familiar sadness.  It was a year where our family underwent massive changes from welcoming new life to saying good bye to an amazing father and grandfather. It was an year in which appreciation for the mundane aspects... Continue Reading →

Tough Road

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 →

Good Bye 2018!

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

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 →

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