Family fights for beloved local teenager

SUDDEN PAIN: Charlie-Kay was a fun loving teenager when she was struck down with a rare disease which left her unresponsive in a Brisbane hospital.
SUDDEN PAIN: Charlie-Kay was a fun loving teenager when she was struck down with a rare disease which left her unresponsive in a Brisbane hospital. Photo: Contributed

BORN on May 20, 1999, local Charlie-Kay Woods was the apple of her parents' eye.

The fourth child in the family, her parents Jelena and Wesley describe Charlie-Kay as the "link joining the family together to make it one”.

Growing up with a tomboy personality and an "I don't give a crap I'm in a dress” attitude, Charlie-Kay developed into a wonderful, kind-hearted person.

Close friend of the family Leonie Brady said Charlie-Kay is "greatly adored by all”.

"Being part of a family of 10, her best friends and supporters are her parents, five sisters and two brothers,” she said.

"Just like her older siblings, she wanted to grow up and make her mark on the world, to be an individual, be herself, with thoughts and dreams for her future.”

Charlie-Kay secured herself a hairdressing apprenticeship at the age of15 and was well on her way to creating a wonderful life.

At the beginning of this year, at the age of 17, Charlie-Kay noticed one of her pupil's growing bigger than the other and a slew of unsettling symptoms followed.

She started forgetting simple tasks, including when to eat or to go to work, and jumbling words, thoughts and memories.

She had moments when she didn't know where she was and her balance was off.

Mrs Woods said Charlie-Kay spent days "separated and reserved from others, feeling disconnected, staring into space, with no idea of time”.

"She looked sickly and felt unwell, finding herself at the doctors only to walk away with a script for sinus medication,” she said.

"My mother's instinct kicked in from 500km away in Gin Gin and I called my best friend to check in on her.

"She made another appointment and the pair found themselves at the Emerald Hospital for a scan.

"The prognosis was a virus on the brain.”

Charlie-Kay was flown to Rockhampton for an MRI scan, which concluded what looked like a tumour.

"By then I was by her side and they flew us to Brisbane the following day,” Mrs Woods said.

"After a spinal fluid test and two brain biopsies that all came back negative, the doctors were baffled.

"Two weeks of tests and no answers, yet she deteriorated after the first biopsy and was unconscious by the second a week later and was admitted straight to the intensive care unit.”

It was another few weeks until a diagnosis was given, but Charlie-Kay had already fallen unconscious, unable to comment on her own verdict.

SUDDEN ILLNESS: Charlie-Kay Woods with mother Jelena before Charlie-Kay was diagnosed with AHL.
SUDDEN ILLNESS: Charlie-Kay Woods with mother Jelena before Charlie-Kay was diagnosed with AHL. Photo: Contributed

Mrs Brady said the doctors called it AHL, acute haemorrhagic leukoencephalitis.

"A rare disease that attacks and damages the myelin sheath that covers the nerve fibres, also affecting the white matter in the brain causing inflammation and brain bleeds,” she explained.

"They proceeded to administer every antibiotic and treatment possible, steroids and as a last resort a high dose of chemo, which ended up stopping Charlie-Kay's mass from advancing and the brain bleeds ceased.”

Devastatingly, there is not enough information on this disease to pinpoint exactly how or why it happened, but in other cases it has followed a viral or bacterial infection.

"This disease is rare but needs to be addressed, researched and a protocol in place for patients experiencing these symptoms,” Mrs Brady said.

"Time is always crucial in any brain trauma, but time is lost by misdiagnosis. There needs to be an awareness and knowledge of this disease to help others.

"Charlie-Kay is a miracle to her family as it quite clearly states that most end in death shortly after onset.

"From her first prognosis to now, she has gone against the odds. She is not just a number, she is Charlie-Kay Woods.”

Charlie-Kay is still unconscious but her condition remains stable.

Her parents, who describe the horrible situation as an "emotional roller-coaster”, are with her 24/7 and are actively caring for her. They train each day for how to look after her in preparation for when she is released from hospital.

"She recently turned 18, spending her triumphant day in a hospital bed unconscious surrounded by unity, the strength of her family,” Mrs Brady said.

"Many disabled young adults end up being forced into aged care facilities as there are no other place for them to go, but Jelena and Wesley are passionate about the fate of their daughter.

"They will eventually take her home and care for her themselves. There is no tearing them apart.”

A GoFundMe page has been set up for Charlie-Kay.

All the money donated will help the Woods buy medical equipment for Charlie-Kay's care.

"They are in need of more generous donations to help their cause, please help if you are able to,” Mrs Brady said.

"Help this family come together as one again and bring Charlie-Kay back home.”

You can donate by clicking here.

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