Amelia's main treatments have started this year. She will undergo multiple injections under general anaesthesia at the Lady Cilento Children’s Hospital. This is called Sclerotherapy. Surgery is not an option as these cysts are around her vital facial nerves, arteries and veins. Later on when, she is older, she might go on medication to aid in reducing the size of the Hygroma. Her specialist aims to have the tracheostomy tube out by the time she goes to school (around 4 years old). It is very much a waiting game for her and for us. They also suspect Amelia might need an airway reconstruction prior to the tube coming out in order to widen her airway so she can breathe normally and make vocal sounds / talk.
Living with a baby with a tracheostomy comes with many challenges (on top of the general 'new baby' adjustments). She requires suctioning day and night, on average, every 30 minutes. This means 24/7 visual observation. It might sound extreme but that is exactly our reality - we can't leave Amelia's side at all in case the tube comes out or something goes wrong with her airway. The hardest part is Amelia can't make any sounds. Nothing. This means if she cries, we can't hear her. If she laughs, we can't hear her. We can't hear our beautiful girl because the tube bypasses her vocal chords.
Dad works full time at Woolworths while studying at CQU to become a high school teacher, therefore mum stays at home and takes care of our beautiful Amelia. This means we are only living with one income, which is why we have made the difficult decision to ask for help.
The funds will assist us in taking care of Amelia's medical upkeep. Any help will be very much appreciated as all of Amelia's treatments take place in Brisbane and we live so far away, but the everday expenses are also proving very difficult to manage on one income.
Any and all help is gratefully appreciated. We thank you all from the bottom of our hearts and we will make sure our beautiful girl knows of the generosity of the people around her.
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