How little Ebony is beating the odds

It was an innocuous fall which triggered a daunting chain of events for a young Mackay family.

ONGOING WORRY: The Newman family, Michael, Liam, 7, Ebony, 2, and Maree. Picture: Nick Wright

IT WAS an innocuous fall, but it triggered a daunting chain of events for a young Mackay family.

In November last year, Ebony Newman fell off a chair while staying with her grandparents.

While it appeared to be nothing more than a simple accident, she was unresponsive for 25 minutes. A MRI scan soon after revealed Ebony, then 18 months old, had a brain tumour.

"Typically, these types of tumours are ... 'slow growing' they described it as," Ebony's mother Maree Newman said. "But hers was aggressive."

As a result, Ebony has had to make frequent trips to Brisbane for check-ups and treatment with her mum, who said it had been an extremely difficult period to juggle, with the family regularly being split up.

Ebony's father, Michael Newman, has had to continue working and also look after their seven-year-old son, Liam, as well as his three children from a previous marriage.

"Liam, when they were away, was a bit clingy and missing Mum," Mr Newman said. "But we'd get Mum on the phone and he'd have a chat and was all good. They (the kids) are getting through it."

Ebony's tumour has since been deemed benign, but the flow-on impacts have been an uphill battle for her. From diagnosis in November to a follow-up scan in February, the tumour doubled in size, placing significant strain on her optic nerve.

Surgery was immediately arranged to save the vision in her left eye.

In addition, Ebony has conditions such as diabetes insipidus and an underactive thyroid. Hypothalamus damage has also ensured she needs regular health checks to make sure her growth hormones have not been affected.

Her parents said this was something they constantly had to explain: the tumour had created an ongoing battle.

"A lot of people think because she's had the surgery and it's not cancerous she's all good. They don't realise the damage she has from the hypothalamus gland ... and that ongoing care which is needed," Mrs Newman said.

Mr Newman added there was always the worry of possible regrowth too.

"They reckon these can come back just as fast, it's just a matter of time. They can't give her radiation until she's around eight, it's way too early," he said.

In spite of what has been a confronting period, the family has been overwhelmed by the external support they've received.

Mojo Kombucha recently donated a heap of kombucha to help Ebony's extreme dehydration due to her diabetes.

Mark Pace, at Pacey's Mobile Mechanical Mackay, has also begun a fundraiser to support the family, and Mrs Newman's brother Geoff Schick, of GP Motor Trimming, has started a Cash For Cans initiative.

A Go Fund Me page has also been created by a close friend of Mrs Newman's.

The funds raised have contributed towards bills, food, medical fees and travel expenses to support the family.

In what has been a harrowing ordeal, the now two-year-old has been a symbol of strength for the young family.

"She's been amazing actually, Ebony is really resilient," Mrs Newman said.

"One minute she'll be upset, crying from blood tests, and the next she's happy playing with bubbles. She's kept us strong during all of it.

"I just go day to day, I can't think too far into the future otherwise I do start to get overwhelmed. I believe children are our greatest teachers with mindfulness, they are so in the moment, and Ebony is so in the moment. That really helps get you through - especially on the bad days."

The family will travel back to Brisbane on Friday for a camp with the Brainchild Foundation along with other families affected by brain and spinal tumours.

Ebony will be back in Brisbane on August 26 to assess the development of her condition.

To support the family, donate at gofundme.com/ebonys-chraniopharyngioma-journey.

Originally published as How little Ebony is beating the odds