Maia needs a course of the drug Spinraza, administered on day one, 14, 28 and day 63, then every four months after that. Unfortunately, the cost of this treatment in New Zealand is exorbitant. Maia's family have made the heartwrenching decision to send Maia and her mother Tegan to Australia for her treatment, leaving behind Dad, Al; stepmum Jodie and five-year-old brother Phoenix. Maia has a dual passport and will be able to get the medication for a fraction of the New Zealand cost. A GoFundMe page was started up, but Jodi says it hasn't been enough to pay for travel and expenses while Maia and her mother are in Australia. She has also had 1000 flyers printed to draw attention to the family's plight that she has been busy delivering.
"Graphic designer Sachiko Kosaka has been instrumental with designing the stunning flyers and she even donated her time with Maia's part of the flyer. I've paid for printing the 1000 flyers and have been on my feet delivering them all."
Before her temporary move to Australia, Maia was a pupil of Porritt Primary School, which held a mufti day on her last day of school.
"The school and her friends and family have done everything possible to include Maia in as many activities as possible and try to give her a 'normal' life. Maia understands well intellectually, you can have a great conversation with her and she takes everything on board. Her hand gets tired easily after writing and drawing. Eating is slower, but she gets there."
Jodi says the smile on Maia's face when she has gone down a slide with her has been priceless.
"It was great to help her experience the freedom of going down a slide — something so many people take for granted, along with being able to walk."
Maia has needed a lot of support, having to use a wheelchair to get around. She has lifting hoists to get her in and out of bed or her chair and has needed ramps for home and school. At night she also uses a variable-pressure breathing assistance machine, which fits onto her head and delivers positive air pressure, making sure she's breathing deeply and getting good oxygen uptake, Jodi says.
"She also has a cough assist machine, which helps inflate and deflate her lungs so she can cough and bring up phlegm or mucus from her lungs. As she is not strong enough to do so unassisted, this keeps pneumonia at bay."
However, Maia has had pneumonia a couple of times, one "really bad" episode on Father's Day about 18 months ago.
"My family and I visited Maia at Starship when she was in hospital with the bad case of pneumonia. I am so grateful she pulled through because Maia is such a beautiful person with a heart of gold."
While in Australia, Maia will also be having operations on her legs to scrape the bone and reshape the socket, then put the leg back into place, Jodi says.
"I am doing what I can to literally get Maia on her feet. Being able to donate $300 from each property I list and sell is a huge help to her and her family."
