14 June 2013 by barb
Put yourself in Damien’s mum’s shoes for a moment…
’Your son has severe global brain damage’.
I feel sick… dizzy… shocked… heartbroken… frightened… confused… my ears are ringing… my eyes are tearing… my hands sweating… my knees start jumping…
It was 2007, he is only 7 months old. Looking at my beautiful little boy, I couldn’t understand. Yesterday, he was my perfect little man, today he is damaged. “But, he can smile… he is so handsome… I did all the right things in my pregnancy… LOOK AT HIM !” I had a normal pregnancy, didn’t get sick, delivery was normal. How could this happen?
‘The results of the MRI show damage all over his brain’, he says. I don’t remember what he said after that.
Sadly, our marriage failed 6 months after the diagnosis.
Damien has had every test the relevant medical teams at the Children’s Hospital could come up with to determine the cause of his brain damage, but, to no avail. His diagnosis is a global developmental delay, hypotonic cerebral palsy, microcephaly and Epilepsy. I have been told it will get harder and he will become more challenging and expensive.
Damien turned 6 on the 9th April 2013 and is in his second year at school. He weighs 26 kg and stands 110cm tall. He is very, very heavy for me to lift. He cannot crawl, bum shuffle, walk, stand unsupported or talk. I thought that by now Damien would be walking, a strange little walk, slow and uneven. I thought he would be using a few words by now…
Damien’s mum is fortunate to access respite carers who visit, as needed, to help care for Damien. This may include a shower, taking him for walks and generally keeping him busy while mum gets to spend some precious time with his 9 year old sister.
Legally, there should have been a hoist for the carers to use when they lifted Damien. Government funding only covered part of the cost. Ramps should also be installed at the entry points to the house to avoid any accidents transferring Damien in and out. There was no government funding for ramps.
There is a great risk that Damien would lose access to his carers if these items were not installed asap.
The gap funding required was $1,464 and our wonderful community donated that within 2 working days!