Carterton girl one of only 13 in world

An 11-year-old Carterton girl who has been seriously ill in hospital for a year has been diagnosed with one of the rarest and most severe brain diseases ever recorded in the world.

Grace Yeats is only the 13th person globally to be diagnosed with a rare and incurable variant of Acute disseminated encephalomyelitis or Adem, and a leading Sydney-based international expert has told the Yeats family it is the worst case he has ever encountered.

Family spokesman and lawyer Jonathan Tanner said Grace had been extraordinarily unlucky to be diagnosed with the disease, which is contracted by only one in several billion people. Compounding that, the odds of the severity of her illness were probably also "one in a million".

Doctors have said it was likely Adem struck in the wake of a throat infection Grace contracted in May.

"It's a very rare form of Adem, which specifically affects the basal ganglia," Mr Tanner said.

"The Sydney specialist has said she is only the 13th person ever diagnosed worldwide and the first ever from New Zealand. It is such a rare diagnosis it has taken 10 months to diagnose and the Sydney specialist said it's the worst he has ever seen."

A person with basal ganglia dysfunction may have difficulty starting, stopping or sustaining movement. Problems with memory and other thought processes are also common occurrences.

Mr Tanner said there was little relief for the family when Grace's diagnosis was made as they had already been told she was incurable.

The Wairarapa-based lawyer said there was one positive from the diagnosis. It had allowed specialists to treat Grace with a form of chemotherapy which had subsequently killed off any remnants of the debilitating infection. He said this had brought relief, as it would stop any further damage or worsening of Grace's condition.

Mr Tanner said the family had been through hell as they tried desperately to support their daughter through a devastating illness, which remained an utter mystery until recent weeks. "The physical and mental effects of Grace's illness on the family has been incredible."

Despite the continuous emotional turmoil which Grace's parents and family had experienced, Mr Tanner said, the support from Carterton, the wider Wairarapa region, New Zealand and from overseas had been incredible.

In late February Grace, who celebrated her 11th birthday recently with family members, was flown to Wairarapa Hospital after nine months at the Starship Hospital in Auckland. Mr Tanner said hopes were high she would be able to move home in coming months.

Mr Tanner said the family were hoping to modify their home, pay for a specialised van and allow some additional funding for the family. To date they have raised far in excess of their target of $50,000 but now more adventurous targets are being set.

"We didn't know she would be permanently disabled and how much care she would require, or how long her mother Tracy would need to take off work, but we now know she's permanently and severely disabled from her illness."

Those who wish to support the fundraising efforts can email bringhomegrace@gmail.com for further details.