This is Ella at 7 weeks old.
I had the pleasure of photographing Ella, her brothers, parents and Grandma recently.
Ella’s mum, Lu, has given permission for me to share Ella’s story with you to help raise awareness of the neurological condition that Ella has.
Ella was born with a rare condition called Bilateral Generalized Polymicrogyria.
In people with Polymicrogyria their brain develops abnormally before they are born. Their brains have too many folds in it’s surface and the folds are unusually small. It can affect just a small part of the brain and have minimal symptoms, or as in Ella’s case, it can be very widespread with severe symptoms. Ella’s Polymicrogyria is called bilateral generalized because it affects both sides of her brain and large areas of her brain. No one knows what causes it. There is no cure for it.
Ella has seizures of varying severity almost constantly. She is deaf and it is thought that she is visually impaired too, and will have her vision formally tested in the coming weeks. Ella is unable to eat normally and has a nasogastric tube for food and medicine. Her mum removed it for her photos and replaced it immediately after we were finished.
As you will see Ella looks absolutely perfect in her photos. Please remember that when you see a healthy looking baby, all might not be as it seems. But also when you see a baby with a medical condition, don’t just see the condition, see the beautiful baby too.
What does the future hold for Ella? At this stage that is a hard question to answer. Ella has a reduced life expectancy, but whether that is months or years or decades it is hard to say. The one thing that we are certain of is that Ella is surrounded by love every moment of every day.
Lu, thank you for inviting me to your home to meet your wonderful family and your amazing little girl.
Ella’s outfit in the two photos above were provided by her family.
This is one of Ella’s special little cuddly friends who has been with her since she was born.
The gorgeous blanket Ella is on was made for her by her mum.
Here are some photos of Ella when she was in hospital.
Baby Photos Brisbane