20th June 2011
I was by myself with Stella for the morning, playing with her on the "sun bed" in her pretty pink corner on Ward 7 East after staying with her for the night.
The Neurologist registrar walked in.
She looked down at us and said “We have the results, did I want to know them now”I said “yes, just tell me”
She said “they’ve come back positive for POLG”
I couldn’t talk, I remember asking three times if she was sure. I just didn’t believe it. I still don’t believe it. I called Scott, told him to come in straight away, I then called my mum.
To say I was utterly devastated is a great understatement.
I could hardly breathe. I just could not believe it.My heart was heavy. It literally felt like it could fall out.
That afternoon we met with the Neurology doctor, and three others plus the nurse manager.
We were desperate. Desperate for answers.
“Is there anything we can do? Can she get a liver transplant if it fails? Is there a cure ?”
We walked away with not many answers, just a whole heap of sadness and disbelief.
We were told it’s genetic and that our Son Jett would also need testing. I asked them to get his bloods straight away and hoped and prayed in my head that he would be fine.In that meeting we said we just want her home as quick as possible. We didn’t care about the paperwork, just let us go home. That was on Monday, we were home by Friday. It was a big week; we had got comfortable there and knew all the girls. It was a big step taking her home and it was scary. She was on a lot of medication and had very complex needs.
Every day I cried in that last week at the hospital. All anyone had to do was look at me and I started.The next stage of our Stars journey was upon us.