Six-year-old firecracker Roxy Anderson loves ballet and broccoli despite walking on surgically reconstructed feet and having fully started taking food by mouth only in the past month.
Her grandparents call her Rhubarb and her most favourite place in the backyard of the Masterton home she shares with her mum Nikki, is the Rhubarb Cottage playhouse "pop built for me".
She falls quiet and stands still for photographs, a natural for the lens, changing poses without bidding and smiling on cue.
Roxy is blissfully unaware of the Givealittle page her mum has launched to help pay for a second pair of expensive orthotic footwear for winter, a home-use walking frame, and swimming and ballet lessons -- all of which were beyond a single-parent budget.
Once her photo shoot is over, the little chatterbox comments on the camera with a patter that has won her an army of Douglas Park School friends, who shout their farewells every weekday while she shuffles from the grounds, back, arms and legs bent awkwardly and pushing a frame usually reserved for the other end of a lifetime.
Nikki says her only child would be hard put to count the many schoolyard mates she had made in the past two years but Roxy makes sure to say goodbye all the same, over and over again, to each kid who cares enough to call out her name.
Roxy was born with multiple pterygium syndrome, or Escobar syndrome, which causes an array of orthopaedic disorders and joint contractures, spinal curvature, and distinctive facial features like drooping eyelids, a small jaw and lowset ears.
She has endured nine medical procedures during her childhood so far with an eight-hour surgery to reconstruct her feet when she was aged about 1-year-old. The other operations have been quick in comparison, her Mum said.
Ms Anderson is a Wairarapa College old girl who returned to the region from Taupo to be closer to her parents and family. She knows of only four other sufferers of Escobar syndrome in New Zealand and one other person in Wairarapa with a related affliction.
"She basically has webbing on all her muscles and joint contractures and all her joints are stuck. Roxy is very, very bent, which is why she needs a walker, but she's also the healthiest of all the people we know with the syndrome, which is a blessing for sure."
Roxy started eating each meal by mouth during the past month, her Mum said, after having previously taken only small amounts of food orally and most through a feeding tube.
She still drinks a specialised high-calorie milk and a medical port remains intact.
The Givealittle page for Roxy has so far gained donations of about $1000 and every cent was vital, Ms Anderson said, with only a single pair of Roxy's $160 over-shoes funded annually and a second walking frame with a $120 price tag needed at home.
There are also the aquatics, dance, art and music lessons in which Roxy has shown interest although ballet and swimming top her must-do list.
"She'd love to do ballet, so I would love to take her along to a lesson on her walker because that's what she wants to do. Not sure how graceful she'd be but she'll give anything a go," Ms Anderson said.
"She's got a love of the water too, she's very confident in the water, but she needs a special rubber ring until she learns how to float and save herself," Mrs Anderson said.
"And all these things really add up, like the little plastic motorbikes you get at Warehouse, we've been through 10 of them already. Now I need to find a bigger trike for her to get around on," Ms Anderson said.
"I've just let her go for it and that's another reason I started the Givealittle page. If there's any opportunity I can give her to better herself or to learn a new skill, I want to help make that happen."
Ms Anderson said any excess funds donated through Givealittle will be put in trust for her daughter. To donate go to www.givealittle.co.nz/cause/help4roxy.
For more articles from this region, go to Wairarapa Times-Age