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She's finally home and she's met her pop idol. Over the past few months things have started looking up for stricken Carterton girl Grace Yeats.
After 16 months in hospital, the 12-year-old has moved back to a newly renovated home that can accommodate her medical needs and met her favourite pop star, Taylor Swift, when she performed in Auckland in November.
Grace is the worst affected of 13 people worldwide diagnosed with a rare form of severe basal ganglia necrosis, which is incurable and has left her unable to walk, talk or swallow since May 2012.
Her mother, Tracy, said Grace had been back living "happily" after 16 months in hospitals.
"Grace has a fantastic space that caters well for her needs and has plenty of room for all the specialised equipment required to care for her."
Her determined daughter continued to make small gains, and recently got a perfect score on her reading and ability to match objects with her gaze, making a "Talklink" communication device possible.
Despite impressing Starship doctors with her progress she was still unable to speak or move normally. She could now say "mum" but it was unclear if she would ever speak fully again.
In November last year, Make-A-Wish flew Grace to Auckland to meet Taylor Swift.
Grace, who was a big fan of Swift before she became ill in 2012, and her family met the singer back stage.
"She also managed to attend the concert and had an absolute ball," Yeats said.
This year Grace will return to St Mary's School in Carterton with a teacher aide.
"When asked the other day, how she felt about going back to school, she spelt out, with the help of her carer's phone and nodding her head, for the right letters, ‘I feel ok'."
In November 2012 Grace underwent rare brain surgery aimed at reducing her severe spasms.
The spasms were still a problem but the deep brain stimulation procedure had led to a reduction in spasms which had allowed use of some medications to be reduced.
Although Grace had made some gains it was still "a hard road ahead", her mum said in a Christmas Day Facebook post.
Yeats also issued a "sincere thank you to everyone who has helped us in some way through prayer, donations, meals, letters, fundraising, the list is extensive".
The family had been "truly blessed" through financial help, including a fundraising match in Carterton in September between rugby personalities and politicians, which raised $16,000.
"But also we have a wonderful medical team that have fought so hard to diagnose, treat and now make her life the best it can be.
"Fantastic nursing staff, a teacher who has worked hard to help Grace realise she is capable, and carers that have come into our home and fallen in love with her.
"We are surrounded by friends, family and a loving, caring community, indeed, [we have] so much to be thankful for despite the losses."
WHAT HAPPENED TO GRACE?
In May 2012, Grace 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 - death of cells or tissue in a region of the brain involved in controlling movement.
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).
It is just the 13th diagnosis worldwide, and the most severe.
The effects include violent whole-body spasms, muscle contractures, scoliosis (deformation of the spine), and seizures.
Grace cannot move, speak or swallow, but cognitively is unimpaired and can see, hear and understand. She has limited movement in one foot, can slightly turn her head, and can smile and laugh.
But her smiles are not cheap, her father Stephen says. "You have to earn that smile. She smiles at people she knows, or people who are genuinely funny with her."
- © Fairfax NZ News
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