Living with CACNA1E
She is the super girl who pushes me to be a better mother. She has a Mona Lisa smile that melts my heart every single time. And even though she cannot speak or hold my hand I know that she knows who I am. She is the biggest blessing God has ever given me. ... Continue Reading →
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 →
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 →
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 →
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 →
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 →
Diyanna's Gene 