Carterton woman Grace Yeats, 20, has died after a decade-long battle with a rare brain illness.
In May 2012, Grace Yeats became one of only a handful of people worldwide known to have a rare form of severe basal ganglia necrosis – death of cells or tissue in a region of the brain involved in controlling movement.
The illness left her unable to walk or talk, after being a healthy and active Carterton primary school pupil just weeks earlier.
At the time, Grace was the worst affected of 13 people worldwide diagnosed with the condition.
Before diagnosis, Grace’s illness had been a mystery.
Grace’s mum, Tracy, announced her death with a Facebook post on Tuesday.
She said Grace had been unwell for weeks.
“I am heartbroken to let you all know that my beautiful baby passed peacefully this morning, safe in her bed as the morning sun first touched her face. No more pain, no more spasms, no more suffering. Dance and cartwheel my love,” the post read.
The post attracted an outpouring of condolences from community members, bringing in almost 500 comments.
Grace’s condition followed an auto-immune encephalitis [inflammation of the brain] caused by Dopamine Type 2
receptor auto-antibodies, a reaction of an organism to its own tissues].
The effects included violent whole-body spasms, muscle contractions, scoliosis [deformation of the spine], and seizures.
Money for her ongoing treatment was raised through the Grace Yeats Trust, and in November 2013, Make-A-Wish flew Grace to Auckland to meet US pop star Taylor Swift.
In early 2016, Grace showed significant improvements in her health since she began taking Sativex, a cannabis-based spray.
The Times-Age reported in February 2016 that Grace had survived a life-or-death crisis, before suddenly talking for the first time since a brain disease robbed her of speech and movement almost four years ago.
Grace’s father, Stephen Yeats, had hoped to speak with his daughter, who was recovering in Starship Hospital in Auckland with mum Tracy at her side, after emergency surgery to replace an infusion pump had failed.
He said the recovery of her ability to vocalise was a miracle.
“I’ll admit it is miraculous. It’s very hard to explain.
“What’s miraculous about it is that for four years we’ve tried to get her to talk.
“She was the talker in the family. We called her ‘Lady Blah Blah’.
“For nearly four years we have tried and tried and tried to get her to communicate with us because it’s just so important, especially in a situation like this. We need Grace to be able to say yes or no.”
Grace had before only ever been able to indicate “yes” with a slight movement of her index finger before her surgery.
“So we’ve gone from that, despite constant coaching from us, to vocalisation,” he said.
“My hope is that if that brain connection is made, if the connection is there, then there’s hope. To be quite honest, I’d lost hope a long time ago. Tracy gets the credit for persisting and believing.”
A death notice in the Times-Age yesterday said a service would be held for Grace at Richmond Chapel, 10 Richmond Rd, Carterton, tomorrow, at 10am followed by private cremation.
