11/09/2022
It was about this time last year we settled back in at home after the wonderful charity Little Wings flew Evaleen and I back after her liver biopsy at Sydney Children's Hospital.
I was amazed at how brave she was for the procedure. And astonished at her strength attempting to roll already when she had been premmie, and she wasn't even 3 months old!
We had a 5 week wait for the full results. During this anxious time our other specialist contacted us. After hundreds of tests they had finally figured out what Evaleen's condition was.
We listened on the phone hopeful that it was something fixable. Unfortunately it was not. We were told the devastating news that our beautiful baby girl had a rare genetic condition TPI deficiency. A condition that I never knew I carried the gene for.
We had never heard of it before. Sydney kids had never seen a case of it. Still we waited on the line in the hope that this was treatable and that Evaleen would be ok. She had to be. Her name meant Life for goodness sake!!
Next we were told the earth crushing news that it was not treatable, there was no cure and that children do not generally survive. The ground had been ripped from under us, we were stabbed straight in the heart. We burst into tears and had no more words.
I cannot begin to describe the dark hole I was in that night.
How do you come to terms with the fact that you caused your and your husband's child so much grief and suffering? That you passed along the very thing that made them pass away? To be brutally honest it made me wish I had died before she was born so that I could have avoided causing such a horrible thing. And causing Evaleen, my husband, Kenway and our family so much pain.
Of course I realised that there was no way I could have known this. And what happened with Evaleen's genetics was extremely rare and extremely tragic. Had she have had a working copy like me she would have been ok. But instead she made a spelling mistake in her genetic coding completely different to mine. But it meant she had a faulty pair and ended up with the condition.
Once I had pulled myself out of my hole we refused to believe that this was Evaleen's fate. We were 100% convinced that if anyone was going to beat this it was her. We were amazed by her strength and how her numbers would start to improve. We truly believed that our love and hope would save her. We also researched Doctors overseas in the attempt to find someone who could help her. When we discovered there was a small team in America working on a cure we were so optimistic. However it turned out their possible treatments for symptom management were in their superficial stages. And a cure was a very long way off.
Next I looked into natural therapies. I took Evaleen for a session of Bowen therapy. A good friend tried reiki. It was all just too late. Evaleen could not hang on any longer.
In the hope of some good news I had a psychic reading. I was told she saw Evaleen happy and smiling and living her life. She showed me a card of a beautiful little girl on a magic carpet surrounded by birds, butterflies and flowers, with a smile on her face. The card said vacation. The psychic told me she would survive.
I wanted so much to believe her with every part of my being...
But deep down at that moment I think I knew in my heart that the card was Evaleen in heaven.
Forever our guardian angel
Forever loved and missed
But finally at peace.
💜🌹💜
