Stricken girl's family hopes for a miracle

 'GRAVELY ILL': Ten-year-old Carterton girl Grace Yeats. Grace has a rare brain disease that means she cannot move or talk.
'GRAVELY ILL': Ten-year-old Carterton girl Grace Yeats. Grace has a rare brain disease that means she cannot move or talk.

Carterton schoolgirl Grace Yeats will need a miracle if she is to walk or talk again.

The once-bubbly 10-year-old will spend her 100th day in Starship children's hospital in Auckland this week, after she was struck down by a mystery brain illness in May.

She now has trouble breathing and swallowing, and her family are resigned to a lifetime of caring for her.

"Unless we get a miracle, we're expecting her to be severely disabled," Grace's father, Stephen, said yesterday. "A few weeks ago we accepted that this has happened and it's not going to change - we're not going to have the Grace we had before."

Test results from Australia had "90 per cent" ruled out Leigh's disease, a rare and often fatal genetic disorder, he said. The most likely diagnosis was acute disseminated encephalomyelitis (Adem) - a brain disease known to occur after viral infections.

Although that meant the St Mary's schoolgirl had avoided the "worst-case scenario", there would be no improvement in her condition.

"It looks as if it's a one-off injury, so it's not an ongoing thing. But she can't leave her hospital bed at the moment."

The family still hoped to bring Grace home, and would have a better idea of their options after a meeting with doctors next week, Mr Yeats said.

The Carterton community has rallied to help the family by starting the Grace Yeats Trust. High-profile supporters, from Prime Minister John Key to All Blacks captain Richie McCaw, have also supported them.

The trust has reached its initial goal of $50,000, with the money allowing Grace's mother, Tracey, to quit work and be constantly by her daughter's side.

"It's really comforting to us, knowing that Tracey can be a fulltime nurse and just focus on looking after Grace," Mr Yeats said. "The support we have received from the community has been incredible."

Trust spokesman Jonathan Tanner said Grace was aware of what was going on around her.

"When her mother talks to her, she can squeeze her hand. She smiles when someone says something funny, and she cries when she's in pain.

"So she's not brain-damaged as such, it's just that the bits of her brain that have been damaged are the bits that control her walking and talking and those sorts of things."

The latest diagnosis meant Grace was likely to survive the illness, he said. "It's kind of like, when you're given several bad options you just hope for the best one, and it looks like that's what's happened."

He said costs for Grace's care could spiral, as the full extent of her long-term needs became known.

Upcoming fundraising events include a quiz night at Masterton Intermediate School on Friday, a dance and auction at the Carterton Events Centre next month, and a charity ball at Masterton Town Hall in November.

Contact Seamus Boyer
Wairarapa reporter
Twitter: @SeamusBoyer

The Dominion Post