Family's incredible spirit inspires NRL legend into action
SHE'S almost three and Maeri Satinie is already turning heads.
Her grin is infectious and her cheerful eyes dart around the room to ensure she never misses a thing.
She keeps a keen eye on her siblings Emmy, 6, and Harlen, 4, as they prepare to unveil a special surprise.
It's been a tough time for the Moranbah family; the kind of rough trot you don't wish on anyone.
But Linsi and Jodi Satinie and their three children have had guardian angels working behind the scenes to help them out.
NRL legend Trevor Gillmeister is one of them after talking to Jodi's brother who is involved in football out at Blackall.
"He told me the story; talk about getting kicked in the guts," he said.
"It's just dreadful. So I just tried to call in a few favours.
"I met them down in Brisbane when they were here for treatment. They're just lovely people.
"Jodi was so embarrassed and that's why we're doing it because we they are humble people."
Linsi and Jodi grew up in Mackay but they moved to Moranbah so Linsi could be closer to his job at Carborough Downs mine.
"Maeri was diagnosed at seven months with Wieacker-Wolff Syndrome which affects muscles and joints," Linsi said.
It has been scary whirlwind before and since the diagnosis, Jodi says.
"It's so rare that there's not a lot of information known about how it all works or how degenerative it is but it's muscle contractions and low muscle tone and weakness," she said.
"When she was born, she had to go into special care because she had some breathing issues … had dislocated hips, her little hands looked different.
"The paediatrician here did tests to see if they could work out what was going on and they couldn't give us any answers.
"So at six days old we got flown to Brisbane where we met lots more doctors and did more tests.
"It just turned everything upside down. The other two kids couldn't come and they had to stay with Linsi's mum.
"Two weeks later we left with, really, no more answers.
"She was discharged from hospital the day she turned four weeks old. She came home with a nasogastric tube, fully feeding through her tube and on her oxygen for 24 hours a day."
Linsi said they were referred to Genetic Health Queensland and eventually got the diagnosis.
"We got there but it was tough. The other two kids were pretty healthy and we never had to deal with anything like that," he said.
"Then through that genetic testing for Maeri, we found out Jodi was a carrier for Becker Muscular Dystrophy so then we had the other kids tested."
Linsi and Jodi said what came next was overwhelming.
"There's a 50 per cent chance with every pregnancy I have that it can be passed on to my children," Jodi said.
"It turns out she has passed it onto Harlen and he has it," Linsi said.
This disease is also a rare genetic condition affecting the dystrophin gene that repairs your muscles.
"With Becker your body is still producing the protein to repair but not as much as normal, as everybody else," Jodi said.
"So as he grows, potentially, he's not producing enough to repair his muscles and they could degenerate and he could also end up in a wheelchair depending on how severe it is.
"But it's unpredictable. Generally, symptoms start in the teen years and then can progress from there.
"It can be very mild and he might not be affected severely for his whole life but it can be as severe as a mild form of Duchenne's muscular dystrophy which is life limiting.
"We have a trip to Brisbane every two years to check his progress with a neurologist and a cardiologist.
"He's had to have speech therapy and in the future he may need OT (occupational therapy) or physio depending on how he progresses."
Emmy is a carrier like her mum so if she wants to have her own children, she could pass it on too.
Maeri is a carrier of Becker too but her disease - Wieacker-Wolff Syndrome - was spontaneous rather than from her parents, the doctors have told the family.
"It was all a bit of a shock," Linsi said.
"You just do what you gotta do to get by. Take every day as it comes.
"We can't look too far ahead."
Maeri was born in Mackay but the family was living in Moranbah.
They now have fortnightly trips into Mackay and regular trips to Brisbane for her treatment.
It was on a trip back from Mackay late last year that they hit a roo in Jodi's car.
The marsupial hit the front driver's side and rolled the whole way down, hitting every panel on the way through.
The car was a write-off and they have been surviving with one car for the family.
Soon after, Jodi was diagnosed with Type 1 diabetes and is now insulin dependent.
"I feel like we must have walked under ladders, crossed a black cat," she said.
"When I got sick at the start of the year and was diagnosed with diabetes, I thought 'it's just unbelievable'," she said.
"You couldn't make this stuff up if you tried, it's crazy.
"But you've just got to keep going, what else can you do?
"You can't stop when you've got three little people depending on us for what they need, so we've got to keep going.
"So now I'm insulin dependent; that's a whole new thing to turn my life upside down.
"But it's a blessing in disguise because I have to make sure I'm looking after myself as well. It just adds another thing to the list."
Although living in Moranbah means they are further away from family and the hospital, it means Linsi can come home every night after work.
"Sometimes it's only a couple of hours before the kids go to bed but it's the extra hands whether it's to chuck the kids in the bath or help finish dinner," she said.
"I couldn't do it without him there every night."
Gilly was stoked Mackay City Auto Group came to the party in helping with the new car.
"The family didn't want any publicity about it but everyone is going through tough times," he said.
"How lucky are we to live in Australia and more importantly Queensland? We're going great guns compared to most places in the world.
"So we all need a kick up the arse sometimes to know how lucky we are.
"Then to hear their story, you just got to help where you can.
"A lot of people are doing it tough business wise so it was good of Ky to help them.
"It makes you feel good to be able to do something for them."
Mackay City Auto Group dealer principal Ky Vogler jumped on board as soon as he got the call.
He and Kia both chipped in to reduce the Kia Carnival cost by $15,000 to about $40,000.
"I get this call from Gilly and he tells me 'I've heard their story and I'm trying to help'," he said.
"They've got three children, two have two separate rare diseases, then the diabetes and the roo, it's just shocking.
"You just can't believe all this could happen to one family. It's just unfair.
"You can't help everyone but sometimes you just got to do what you can.
"We're a local business and they are locals from this region so you want to help."
Linsi and Jodi did not ask for help but they are grateful for the support.
"It's unreal," Linsi said.
"It's something we never expected but we couldn't be more grateful," Jodi said through welling tears.
"There's a lot more people out there more deserving than us but for something like this to happen is incredible."
Mr Vogler said the next step was raising $20-30,000 to convert the car for Maeri's wheelchair.
He said the company had set up a GoFundMe page and spoken to some charities in the hope the community could also get behind this family's journey.
Maeri will turn three in October. Her condition means she can't talk, though she can say mum on repeat, so they do speech therapy for alternate communication with her.
She will need lifelong therapy.
"She can't walk so for her to be able to interact in the community, once she's going to kindy, she's going to need a mobilised chair, so this is why we need this car so we can get it converted so we can put a wheelchair in the back," Jodi said.
"She's the most happy, easygoing kid for all that she has to put up with.
"I would complain if I had to go through all she has to but she does it with a smile.
"She doesn't miss a beat, she takes everything in and knows exactly what's going on and she doesn't want to miss out on anything.
"She's always trying to get in there and play with her brother and sister.
"They're so amazing with her, it's very special.
"They just take it in their stride; it has been hard for them and they've had their moments but we're so lucky, they love her to death."
"Nothing ever phases her," Linsi said.
With loving parents like Linsi and Jodi, it's no wonder these three kids bring warmth into the room.
"No, we're lucky to have them. They have taught us a lot," Jodi said.
The GoFundMe page has already raised more than $12,000.
To donate, visit https://www.gofundme.com/f/help-jodi-and-linsi