Yarrowyck family raise awareness for life-threatening GRIN1 disorder

Yara has a condition called GRIN1 which causes frequent and often life-threatening seizures that have kept her in hospitals for more than half of her young life.

It also makes Yara much more vulnerable to common illnesses - something as small as a cold is life-threatening for the young child.

"We recently just ended up with a cold so [the] Westpac [Rescue Helicopter] flew us down to John Hunter for about two weeks," Yara's mother Abby Croft told the Leader.

"This time when we were in hospital she had to be mechanically ventilated, her lungs collapsed."

Ms Croft is campaigning for more research and awareness for GRI disorders like the one affecting Yara, and has a Gofundme page to help provide her daughter with high-quality palliative care.

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Each stint in the hospital is a roll of the dice for little Yara, and her odds get worse each time.

"Every time she needs that level of support it causes scarring and more damage ... over time she'll potentially reach the point where her respiratory system gets weaker and weaker and there may be one [infection] she won't bounce back from," Ms Croft said.

What little comfort Ms Croft finds is in her family and the support she and Yarra have received from their local community.

For example, Ms Croft's friend and former employee, Kirsty Smith, has resolved to run 100km in July to raise money for Yara and her family.

Ms Smith was moved to help after she saw Yara in John Hunter Hospital.

"[She was] the most innocent, tiniest little person in a big bed connected to lots of machines," Ms Smith said.

"I can honestly say it was the most fear I've ever felt, so how her mum, dad, brothers and sisters manage on a daily basis is beyond me."

Ms Croft says it's a struggle to hold everything together.

"I'm not entitled to any government assistance, but I still have my bills and my mortgage and three other kids to support. I've got a little girl that's only home because I can care for her, so I can't go to work ... I don't know how much more I can do," she said.

"I don't know how to sustain this."

As a registered nurse, Ms Croft was the family's main source of income.

Since looking after Yara full-time, Ms Croft says her family has burned through most of their hard-earned savings.

Ms Croft's partner Nathan Kenny is doing all he can to support the family.

"Nathan is shearing and picking up rural contracting work to try and make ends meet, but it's nothing like what I earned nursing," she said.

"I'm sitting there with a baby that's unconscious and I don't know whether she's going to wake up, whether tonight's going to be her last night, and her dad's out trying to get enough money to pay the next electricity bill."

The uppermost thought in everybody's mind is how much time Yarra has left, which might not be long as the severity of her seizures have caused epileptic encephalopathy, a condition resistant to most medications.

Most infants with epileptic encephalopathy don't live to their first birthday. Yara might not make it to her second.

"Even on the new medication, she still has seizures every day," Ms Croft said.

"When she does get a cold and she's in that space where she's unconscious and unresponsive and in a seizure state for hours and hours, and the amount of different drugs they pump into her to try to get her back.

"When she's not responding to all that you just sort of sit there and think, 'is this the one we're not going to be able to get her out of?"

Ms Croft also says it's hard to find support organisations for Yara due to the rarity of her baby's condition.

As of 2021, fewer than 100 people worldwide have been diagnosed with GRIN1.

Any who would like to support the Croft family can donate to them directly through the following link: www.gofundme.com/f/yaras-journey

The Croft family's Gofundme had raised more than $8500 this week.

A significant portion of those funds have been donated to the CureGRIN foundation, a US-based charity responsible for organising and funding the limited amount of research that has been conducted into GRI disorders since they were discovered in 2013.

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