Decision that changed a little Aussie girl’s life
THE night the call came through, Sarah Lockett had never seen her daughter Montana get up so quickly.
"It was quarter to four but she was in her dressing gown and then said: 'Let's go mum. We can do this'," Sarah said.
Since she was a baby, Montana had been battling ornithine transcarbamylase deficiency (OTC), a rare genetic disease that stops her breaking down protein properly.
The six-year-old had never eaten eggs or meat because consuming too much protein would cause toxic levels of ammonia to build up in her body.
If not treated, the ammonia can travel to the blood and the brain and lead to death.
Her diet was a constant battle and Montana struggled to get enough nutrients, leaving her with little energy and struggling at school.
Eventually, the decision was made to feed her via a tube in her stomach but these feeds would last hours, sometimes overnight, and she would also have to have them at school.
"She hated school in the end," Sarah said. "She hated being pulled out of class for a feed. The kids would ask questions and she would cry in the morning before school. She asked: 'Why aren't I normal?'"
The family struggled for five years to keep Montana's diet on track but she was often in and out of hospital. Even getting the cold would require her to get an intravenous drip filled with high-energy formula and other medication.
Then came a particularly scary episode when Montana couldn't stop vomiting.
"She went to get off the lounge and just collapsed. She was like jelly. She couldn't talk, she didn't know who we were," Sarah said.
It was the worst that Sarah had ever seen her daughter and she said she feared Montana would be left with brain damage.
"I just lost it. It was hard to sit there and not do anything," she said.
"We had been trying to manage this for five years but she was not getting any better; she was getting worse."
Originally, Sarah did not want Montana to get a liver transplant because of the risks and saw it as a last resort only.
"(But) I felt I owed it to Montana to try and give her a better life than what she had," she said.
"She had no energy, she would just watch TV and I'd watch her carry her portable machine around, following her younger sister, it just wasn't fair."
When the call came through on November 15 last year that a potential match had been found, Sarah said Montana knew the gift she had been given.
"I looked at Montana and I said, 'Are you OK?' and she said, 'I'm a bit nervous Mum, but do you think I can thank them in person for giving me their liver?'
"I said, 'No, unfortunately they've had to go to heaven but you can thank their family and she said, 'That's a lovely thing they're doing for me,' and I said, 'Yes it is'."
Since the operation, the family has not looked back and Montana has so much energy it's like she has been reborn.
"She wasn't living before and now she's living," Sarah said.
"She's eating everything, running and is so happy and so well. We never realised how sick she was before. She is thriving in so many ways. She's so happy and content."
Before the surgery, it was difficult to coax Montana into eating even a single strawberry or raspberry. She would fall asleep in class and would often be lethargic, disorientated and confused by the end of the week.
After the surgery, Montana finally got to eat things like meat, eggs and milk for the first time. She also tried her first plate of bacon and eggs.
"Watching her sit down and eat this food is amazing; it's unreal. Never in my dreams would I believe it would be this good," Sarah said.
The organ donation changed Montana's life and Sarah said she had seen first-hand how powerful it could be and the difference it could make.
"Now she's free from that disease and it was all because of someone's generosity to donate their organs," Sarah said.
"She enjoys going to school, she gets up everyday and packs her lunch box and she can pack whatever she wants. She's free to run, she's free to play, she's started dancing."
While it was a sad decision for a family to make, Sarah said their loved ones could be "remembered for the life they lived but also remembered for the life they've given".
"Thanks to them she's alive and she's well and she's living for the first time ever," she said.
"She's got a guardian angel now watching over her that's going to be with her for the rest of her life - knowing that they gave her a chance to live."
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