Devora Busch and Richard Barry describe their golden-haired daughter Rheegan as “a toddler trapped in the body of a 10-year-old girl”.
The couple’s beloved daughter is one of the worst-affected special-needs children in New Zealand. Rhee, who has a non-identical twin sister, is severely autistic. “As our 13-year-old son said, the sun shines on one side of Rhee’s brain – the other side is in the shadows,” tells Devora, 47.
While she is a happy girl who loves swimming and nursery rhymes, she lacks any sense of danger, and is driven by a constant desire to escape and run. As a result, the family’s home in Titirangi, West Auckland is now fully “Rhee-proofed”, with safety glass, window locks, two-metre-high fencing, and other safety measures designed to keep her from harm.
But just as life-threatening is Rhee’s eating disorder, pica – an uncontrollable compulsion to consume non-food items.
The 10-year-old devours almost anything she can get her hands on, including grass, dirt, her nappy filler, the foam off the couch, Pink Batts and even wall lining. Rhee likes to bite herself and pick the scabs, but can’t even wear a plaster because she would eat it. “She’s at constant risk of death from choking or being poisoned,” says Devora.
“As our 13-year-old son said, the sun shines on one side of Rhee’s brain – the other side is in the shadows,” Devora says.
Early fears
As a young mum raising three children under three-and-a-half, Devora didn’t notice anything different about Rhee until she was two. Rhee was first diagnosed as “mildly autistic”, but she didn’t develop much after that.
In the years that followed, Devora gave up her career as a primary school teacher to focus on the 24-hour-a-day job of caring for Rhee. Their girl sleeps only a few hours a night and is constantly on the move. Rhee feels the most peace at home and knowing this, her devoted parents have spent the last eight years tailoring the house to fit her needs.
“It’s hard to visit people and take Rhee places, so home is really important,” says Devora. Their lounge has two adult-sized swings, play mats and other gym equipment. Outside, she has a lawn and trampoline to play on.
“Home is Rhee’s sanctuary and where she feels safe,” tells her mum. It’s been a challenging 10 years for the family, but putting Rhee into care has never been an option. “You would have to pry her out of my dying fingers,” insists Devora.
The lounge has been turned into a playroom for Rhee, who only sleeps for a few hours a night.
Devora says baby Rhee, who is a twin, was meeting all her milestones. Right: Rhee with her siblings.
Out of home
However, Rhee’s sanctuary is no longer safe – earlier this year, Devora and Richard were told the devastating news that their Titirangi home was a leaky building.
At the end of the year, the family needs to move out for at least four months so builders can rid it of toxic mould and re-clad the outside. The change will be particularly hard on Rhee, who has lived in the house since she was 18 months old.
The challenge facing her parents now is finding a temporary home that will meet Rhee’s needs. As well, the family needs to pay the $130,000 shortfall between what the government and local council will pay for fixing their home.
To add to the financial strain, poor health has meant Richard is no longer working at Glen Eden Intermediate, where he has taught for nearly 30 years. Suffering acute hearing loss and other health problems, he is simply “worn out”, tells a concerned Devora.
A homeless Richard and Devora are now desperately seeking accommodation while their leaky house is being rebuilt.
For a hard-working couple, asking for help has been difficult to do. “I’m the sort of person that can be bleeding to death and I will say I’m fine,” laughs Devora. But a relative has come to their aid and has set up a Givealittle page to raise funds.
The priority now is finding a temporary home, but further down the track, once Richard is well enough to look after Rhee, Devora may return to work.
The couple say their life can be challenging, but they wouldn’t have it any other way. “I don’t feel sorry for Rhee,” explains Devora. “She came to us how she was and our job is to make her life as wonderful as we can.”
Concludes Devora, “Rhee is zest and joy. She is the flavour of our tribe and we just make it work.”
Rhee loves cuddles with her mum, who she sometimes calls “honking goose”!
