PIERS FULLER/STUFF
Tracy Thomas and her daughter, Grace Yeats, pictured in 2017.
A woman with a well-documented devastating brain illness has died a decade after her diagnosis at age 10.
In 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. It initially left her unable to walk or talk, after being a healthy and active Carterton primary school pupil just weeks earlier.
Grace’s health was documented by Stuff many times over the years.
However, mum Tracy announced her daughter’s death via social media on Tuesday. Grace had been unwell for several weeks.
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“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 xxxxx,” the post read.
At the time, Grace was the worst affected of 13 people worldwide diagnosed with the condition.
In May 2012, she came home from school with a headache and was taken to hospital. For months, her illness was a mystery.
After extensive research, doctors diagnosed severe basal ganglia necrosis.
The condition followed an auto-immune encephalitis (inflammation of the brain) caused by Dopamine Type 2 receptor autoantibodies (a reaction of an organism to its own tissues).
The effects included violent whole-body spasms, muscle contractures, 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.
Grace also had a breakthrough with her speech after using medicinal cannabis in 2016, but the treatment cost $1100 a month.