After our baby having a seizure that couldn’t be controlled for over 24 hours, we were stunned as to what could be happening in her little head.
One doctor described her brain as being “very angry” and another saying that she is a “very sick little girl”
Three weeks in ICU and then another seven on the ward. God it felt like a life time.
It took over nine weeks for the results to come back from a laboratory in Melbourne.
Every week we were waiting, waiting for it to come back negative to what they all suspected it was.
None of us went crazy searching it on Google, not until the day we found out. I didn’t want to be thinking negatively so that whole time we kept being positive. Saying that what happened was a once off thing and that‘ll it’ll never happen again. Positive thinking the whole way through was what kept me sane. If anyone was down I couldn’t handle having them around, especially around Stella. I believed she could and still can feed off our energy and we needed to be strong around such a strong little girl.
So the results came back positive. What we had dreaded……
She has been diagnosed with a Rare genetic mitochondrial disorder: POLG
We had never heard of this before. Didn’t have the faintest clue about what it meant for our baby princess and what it actually did to her body.
After some research I was left feeling absolutely devastated and distraught.
My hopes and dreams crumbled.
All I could think about was how I wouldn’t see my daughter grow up into a woman. We weren’t meant to outlive our daughter.
There is no cure for this disease and, currently, no way to slow its progression.
Well done for raising awareness for Stella and other families going through the same or similar. oxoxo
ReplyDeleteI think most people would be the same, have never heard it before. I had only heard of it due to my nephew, but he is still a mystery, no diagnosis.