Stephen Yeats is determined to give his daughter a dignified future - despite his grief at seeing his dancing, skipping girl suffering in silence.
More than a year after being struck down with a rare brain illness, Carterton schoolgirl Grace Yeats is beginning to move her foot to communicate.
The 11-year-old is the worst affected of the 13 people worldwide diagnosed with a rare form of severe basal ganglia necrosis.
It has left her paralysed with little hope of recovering. But she could be going home from Wairarapa Hospital within six weeks once renovations to the family home are complete.
Father Stephen said Grace would need 24-hour care once she moved home and was likely to remain "extremely disabled".
Mr Yeats said he and his wife, Tracy, sons Gus, 14, and Finn, 15, and daughter Fi, 20, were continually buoyed by the "amazing" community support to bring Grace home.
But at times they had struggled to cope with Grace's "incredibly bad luck" and the suffering she had experienced since last May.
"She was a happy and healthy Kiwi kid, a high achiever. She loved dancing . . . she learned piano, she spent a lot of time in our pool. I used to call her Skipper, because she skipped everywhere."
Now Grace was unable to move her body at will and could not speak or swallow. She could, however, communicate through smiles, and "lights up" when she saw a familiar face, Mr Yeats said.
There are indications she has some control, at times, over the movement of her foot to hit a button, which may eventually allow her to communicate.
As well as experiencing financial hardship, the family was under severe stress, Mr Yeats said.
"It's not as if you can get over it, the grieving process continues . . . I've found it really cruel."
Mr Yeats, who is co-owner of Masterton plywood supply business The Ply Guy, said one of the main goals of community fundraising was to allow the family to function as normally as possible once Grace returned.
Grace came home every weekend for a day, which she loved, but could not stay overnight because of her health needs.
The renovations consisted of "basically an extension of the hospital ward" and included a hospital-type bed, a wet-floor bathroom with a specialised showering system, a bed-hoist, pumps and a heating and cooling system.
Grace would also need constant, highly skilled professional care, especially as her painful seizures were severe enough at times to physically harm her if she was not properly supported.
"[Sometimes] you have to try and hold her to keep her calm."
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