Yarrowyck family launches GoFundMe for 16-month old with GRIN1

For the parents of sixteen-month old Yara, who suffers from a rare genetic condition, the answer is a 500km trek from their farm in Yarrowyck for specialist medical care in Sydney.

"We've had so long in hospital now. It's a matter of trying to shovel things back into place at home ... we've got to find a new normal and I'm not sure what that is yet," Yara's mum Abby Croft said.

Yara has a very rare disorder known as GRIN1, which has caused her to spend more than half of her life in hospitals.

As of 2021, fewer than 100 people worldwide have been diagnosed with the same condition.

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GRI disorders are part of a family of genetic diseases which hamper the development of certain receptors in the brain, causing developmental delay, speech deficiency, inability to walk, low muscle tone, gastrointestinal issues, visual impairments, and seizures.

For little Yara, this means frequent, silent, and often life-threatening seizures.

"When she crashes, she crashes really quickly and shuts down," her mother said.

It also makes Yara much more vulnerable to common illnesses.

"Ninety per cent of the time when she's got an infection we've ended up in intensive care," Ms Croft said.

"It's a really hard thing to watch because you get glimpses of what's a normal little baby, but some days she'll only have an hour of the whole day when she's bright and well enough to learn and develop," she said.

She said her other three kids, aged 10, 11, and 12, have been amazingly resilient, stepping up to help the family farm and supporting their parents however they can.

"We're really open with them about the road we're on, and they never begrudge her anything," Ms Croft said.

The kids are even working on setting up an online store to supplement the family's income, with the goals of selling graphic designs printed-on hoodies and t-shirts.

"The hardest part on them is the unknown length of time I'm away with Yara ... they've been grown ups and taken on the extra, but they're missing out on a lot and they miss a lot of time with me," Ms Croft said.

It certainly hasn't been easy on the family, which has been through difficult conversations and missed out on athletics carnivals, school speech days and plays.

"Over time it all adds up. I think we all have that limit where we get sick of being tough," Ms Croft said.

The family has also experienced some of the same financial pressures affecting many farmers in our region, such as floods, droughts, and other natural disasters.

Owning their own farm also makes the family ineligible for many forms of government assistance such as a carer's pension, Centrelink, or NDIS financial assistance.

To help alleviate some of this financial stress, Ms Croft and her partner, Nathan Kenny, set up a GoFundMe page.

"A lot of people suggested it and wanted me to do it. It's not really in me to ask for help, but every door that we tried was closed because we don't fit into a box," she said.

So far the GoFundMe has raised $6000 in the first three weeks.

Ms Croft said the money will primarily go to Yara's care, but the dream would be to get Yara a more special form of assistance.

"Deep down I would love to be able to get Yara a seizure alert dog, because her seizures are silent and a little bit of backup would go a long way," she said.

A service dog would also help Yara with her physical therapy.

"There was a retired guide dog in Sydney called Nancy, and when we met Yara all but leapt out of her pram to get to Nancy. The physio doctors have been trying so hard to get her to grab something and hold it. Well, she grabbed Nancy, and she pulled herself out of her pram and she laid on Nancy, laid down on this dog, and fell asleep," Yara's mum said.

"It was the biggest therapy any kid could have," she said.

But seizure dogs can cost between $40,000 and $60,000, up to ten times what they've raised so far.

"For a little kid that goes through so much, to have something constant like Nancy to go through it with her would be the best gift we could give that little girl."

There is one light in the tunnel for Yara's family.

Ms Croft says since GRI disorders were only discovered recently (2013), their family is holding out hope for a cure to be found.

"There's not a very good prognosis with what she's got, we know she's palliative, we know that the outcomes are very unlikely to be good, but there's a foundation in America doing so much research into GRI disorders and my thought is if I can keep her as safe as I can for as long as I can, a miracle might happen," she said.

Founded in 2018 by a Canadian author whose son was one of the first ever GRIN1 patients, the CureGRIN foundation in the US is responsible for organising and funding the bulk of research conducted into GRI disorders so far.

Ms Croft says a significant portion of the money raised from the GoFundMe so far has been donated to the CureGRIN foundation to help them find a cure.

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