Ziya - Our Warrior Princess
Ziya lived a happy and full life until the age of 20 month 5 days old. This gorgeous baby girl suffered from a life limiting and terminal form of a condition called Mitochondrial Disease. She had a rare genetic mutation called KARS that caused her to have this condition and a very rare form of the Mito which puts her at 1 of 11 children in the world and the only one in Australia. She was born completely deaf however was tracking well developmentally until she got to about 2 months of age.
When she was 2.5 months old she had a 7-8 hour long vicious seizure during which we almost lost her. She kept bouncing in and out of hospital for months after this event where we had to juggle work, home, our other beautiful typical child Mahi and a very critically ill Ziya. In the midst of all this we; her parents and her doctors were relentlessly trying to figure out what was going on with Ziya and what was causing her to have all these complex medical problems that had left her developmentally delayed, regressing in her development, seizures, unable to feed with her mouth and was now being fed with a nasogastric tube.
Finally in November 2018 we were given the diagnosis of Mitochondrial disease after the KARS gene mutation was found in her genetic testing results. Unfortunately at present there is no cure for Mito and it is a progressive condition. Ziya was predicted to have a limited life expectancy and the doctors speculated she may not live past 10 years of age. She made it to 20 months and 5 days.
We have a Facebook page (http://www.facebook.com/ziyamovement) where you can learn more follow our story and learn and hopefully take away something and a little part of Ziya with you as you read. But most of all support our mission to raise awareness and raise funds for mito to ultimately find a cure. It is a very difficult thing to open up our life to the public and an even harder task to express ourselves in the most productive and pure and raw way. So please do respect this hardship but also please feel free to send me a message if you want to ask or say anything at all even if it isnt about Mito or anything related to this because this page is about your story as much as it is about ours.
We have tried to raise awareness as much as possible to attract crowdsourcing and hopefully researchers in the world. Here are some of the news and media articles we managed to get done.
1. https://www.facebook.com/135107816501387/posts/2527593817252763?sfns=xmo
3. https://www.facebook.com/198087696875068/posts/2677102798973533?s=505440101&v=e&sfns=xmo_
4. https://www.sbs.com.au/yourlanguage/hindi/en/article/2019/04/03/every-day-we-fight-keep-her-alive
6. https://www.facebook.com/cuecardcompany/videos/676222246121865/
PLEASE FEEL FREE TO SHARE ZIYAS STORY IF YOU NEED ANY EXTRA INFORMATION FEEL FREE TO PM ME...
We are inviting you all to contribute donations to the Mito Foundation in memory of our warrior princess... Mitochondrial disease (mito) is a debilitating and potentially fatal disease that reduces the ability of the mitochondria to produce energy. The Mito Foundation supports people affected by mitochondrial disease (mito), funds essential research into the prevention, diagnosis, treatment and cures of mitochondrial disorders, and increases awareness and education about this devastating disease.
