It's only inherited when both parent pass on the mutated gene and Grace is one of only two children in the country with it.

The now two-year-old has since lost the ability to crawl, sit up, talk, feed herself, or pick up toys.

It wasn’t until Jessop’s first child, Anita, died in 2019 – at six years old – that she found out about the fatal genetic condition.

“It was a relief to finally know.”

Anita had been hitting all her milestones and seemed healthy until 9 months old, when she started getting a tremor.

She’d walk on her knees, pushing along a little wooden trolley, and Lisa thought she was on her way to walking.

But then she started to fall.

“She was my first, so I didn’t know anything.”

She declined quite quickly, becoming unable to walk alongside furniture, crawl or sit.

Then a feeding tube was needed to stop her aspirating and getting pneumonia from eating and drinking.

Anita would have seizures that progressed until she needed emergency anti-epileptic medication and required oxygen at home almost every day.

Despite lots of medical intervention and testing, they didn’t know what was causing it – so symptoms were being treated as they appeared, Jessop said.

Lisa found out Grace had the same condition a month before her first birthday.

She thought she knew what to expect this time, but Grace’s condition has deteriorated a lot faster than her sister’s had – and within only about six months.

She was able to eat a tablespoon of cake for her 2nd birthday in October, but has since had a permanent feeding tube put in.

She now needs around the clock care.

Grace can no longer talk, but will sit in front of her favourite movie Moana, smiling at the television.

It’s scary, says Lisa. “I feel like she may not reach five, going off how Anita progressed.”

“Everything went downhill really quick last year.”

Grace can no longer talk, but will sit in front of her favourite movie Moana, smiling at the television.

Sometimes, she’d even makes a wee happy high-pitched noise.

“It’s pretty cool,” says Lisa.

The Hamilton-based family are now trying to fundraise to take the Moana-loving little girl and her older brother Cody on a Disney cruise to make some memories that’ll last forever – and for Grace’s memory to live on.

The Hamilton-based family are trying to fundraise to take Grace and her older brother Cody, 9, on a Disney cruise to make some memories that’ll last forever.

If they make it on the trip in December, Cody will turn 10 on the last night of the cruise.

It has been tough for him too, says Lisa, having watched his big sister die and now facing the same fate for his baby sister.

A Givealittle fundraising page has been set up, aiming to raise $20,000.

-Rahcel Moore/Stuff.