Ella Yearbury's parents sleep in her room to make sure they can help if she has a seizure. Photo / Supplied
Ella Yearbury has defied the odds since the day she was born but is now facing one of her biggest challenges yet.
The bubbly 4-year-old was born on May 4, 2013 - 15 weeks early and weighing just 800g.
"The odds were stacked against her but no one knew how tough a tiny fairy could be," Mum Kat Yearbury said.
Yearbury and her husband Brett had lost their first child during birth a year before. "We were still grieving Emily and we were grateful Ella was still here and putting up such a fight," she said.
But the situation got worse. Ella suffered a huge brain bleed when she was a few days old and her parents were told she would never walk, talk or even recognise them.
On day six she was rushed to Starship for emergency bowel surgery and on day 13 and 20 she had surgeries to alleviate pressure on her swelling brain.
The tiny tot spent her first 122 days of life in the neonatal intensive care unit and has already had 13 surgeries in her four years of life.
Ella made it home two weeks after her original due date and, despite the grim prognosis, she now recognises people, can talk and can even walk a few steps with the help of a walking frame.
"She crawls around the house like a crazy monster, she tries to climb on things and she's managing a few steps," Yearbury said.
"I am in awe of her and what she manages to put up with.
"She's really tough. Her speech has really developed. She can tell stories ... that's something we never expected because we were told she would never talk.
"We've all had blood tests this morning and Ella's been giving us cuddles and rubbing our hands and saying it's okay if we cry and it shouldn't hurt too much.
"I'm blown away by her, I really am."
But there were still huge challenges to overcome. Ella has cerebral palsy, hydrocephalus (the accumulation of cerebrospinal fluid within the brain) and epilepsy. Her legs are too tight to be able to walk and find balance, she requires a shunt to help alleviate pressure in her brain and relies on daily medications to prevent seizures.
Earlier this year Dr Tae Sung Park agreed to perform a Selective Dorsal Rhizotomy on Ella at the hospital he works at in St Louis, Missouri.
The surgery would involve cutting the nerve in the spine which causes spasticity in the legs. Park believed the surgery would allow Ella to walk with crutches and, if there were no complications, she might even be able to walk without aids.
The family had already raised $75,000 towards the surgery and recovery which they estimate will cost $150,000 but there was still one major issue which stood in the way.
This winter the family discovered that even the common cold could trigger a seizure in Ella and traditional emergency medication could not be used because it affected her breathing so she had to be rushed to hospital each time.
Her seizures were more subtle than most and could last for more than two hours so her parents slept in her room to make sure they could help if she had a seizure in the night.
Because of her seizures no one would sell Yearbury travel insurance for Ella, making it too risky to take her to America for the surgery she so desperately needed.
Doctors were still doing more tests to look at different medications and were even considering brain surgery to keep her epilepsy under control.
"We need this operation and I don't know how [we'll get it] at the moment," Yearbury said.
• To donate to the family click here.
Cerebral Palsy
• Cerebral palsy is a term used to describe a group of disabling conditions, which affect movement and posture.
• It is caused by a defect or lesion to one or more specific areas of the brain, usually occurring during foetal development before, during or shortly following birth or during infancy.
• Cerebral refers to the brain and palsy to muscle weakness and poor control.
• Although cerebral palsy is not curable in the accepted sense, training and therapy can help improve function.