Amelia-Rose. Fight To Survive
Donation protected
Amelia - Rose, born with "Finlay Marks Syndrome"
This caused her to be born without skin or skull on the back of her head, leaving her with exposed brain at birth.
With still no skull, this can make the simplest of accidents fatal for Amelia.
She is also fed through a tube in her stomach- a "bard button"
Regular trips to medical appointments between Sydney and Newcastle (a 600km journey) are apart of "normal life" for Amelia for all surgeries & therapies.
With 5 surgeries between John Hunter and Westmead, unfortunately she still has a fair few more to go.
Now Amelia has begun to have complications with her sugar levels, drifting info seizures due to hypoglycaemia with no real answers yet as to why. This issue has needed input by Westmead children's hospital and we may be looking at a trip there soon for testing.
We are also hoping to find someone to begin research into this rare genetic condition, so that future generations can have more insights and information into the condition and available treatment options. Unfortunately it seems doctors don't yet know enough or mostly even about this condition - making treatment even more frustrating & lengthy.
Please, if you are able,
donate to help Amelia
Thank you

This caused her to be born without skin or skull on the back of her head, leaving her with exposed brain at birth.
With still no skull, this can make the simplest of accidents fatal for Amelia.
She is also fed through a tube in her stomach- a "bard button"
Regular trips to medical appointments between Sydney and Newcastle (a 600km journey) are apart of "normal life" for Amelia for all surgeries & therapies.
With 5 surgeries between John Hunter and Westmead, unfortunately she still has a fair few more to go.
Now Amelia has begun to have complications with her sugar levels, drifting info seizures due to hypoglycaemia with no real answers yet as to why. This issue has needed input by Westmead children's hospital and we may be looking at a trip there soon for testing.
We are also hoping to find someone to begin research into this rare genetic condition, so that future generations can have more insights and information into the condition and available treatment options. Unfortunately it seems doctors don't yet know enough or mostly even about this condition - making treatment even more frustrating & lengthy.
Please, if you are able,
donate to help Amelia
Thank you
Organizer
Wendy Skavinski
Organizer
New South Wales
