When Sarah Innes Mason was born, her fight made headlines across Australia... This is the life-affirming story of what happened next - and its heartbreaking end
Born without a pancreas, doctors prepared her mum Karina Mason for the worst.
Her story made headlines across the country, with Australians captivated by the little girl's lust for life.
Born weighing just 735 grams, just 31cm in length from head to toe, her blood count was so low that she had a blood transfusion just 18 minutes after birth.
That was 16 years ago.
Sarah died on July 26 in the arms of her mother and family across the world in South Africa, where she moved in recent years.
'She was our world, we nicknamed her Sare Bear, because when she was in the NICU when she was finally able to wear clothes. She looked like a little teddy bear,' Karina told the Daily Mail.
'They didn't expect her to live much past her first birthday but they also don't know how or when the constant struggle on the heart, liver, kidneys, lungs, that catastrophic multi-organ failure will occur without warning, like it did in Sarah's case.'
Karina said she knew the child she was carrying was seriously ill.
'But the very top perinatal and obstetric specialists in Australia had no answers, an amniocentesis had ruled out the trisomies, specialist scans had ruled out cardiac issues, her kidneys appeared fine,' she said.
'My amazing obstetrician I could see was getting extremely worried and two days prior to her early arrival, we had the discussion that we should prepare ourselves as our precious bundle is going to have a tough battle ahead to survive.'
Sarah spent 141 nights in intensive care before she was finally allowed to go home against all odds.
For the next four-and-a-half months Sarah went back and forth between home and hospital and the Ronald McDonald House multiple times a day.
By the time she was six days old, Sarah had endured 13 operations including major abdominal surgery.
At 11-months-old she had open-heart surgery.
'She has had 74 admissions to hospital, with 11 of those to ICU on a ventilator,' Karina said.
'During the COVID pandemic in 2020, she became ill very quickly. She was rushed into ICU in acute kidney failure.
'It has now been four years and three months since she has been admitted to hospital or we have had to rush her to the emergency room.'
Karina described Sarah's condition 'like walking along a tightrope'.
'With the pancreas it both produces insulin but also digestive enzymes so the fats in what we eat can be broken down and absorbed but there are also important vitamins that are absorbed with fat A,B,D,E,K,' she said.
'The medication to help absorb the food/fats only works for 20 minutes, and it also needs to be activated in the small intestine, so you have to get it down the throat inside the digestive tract and into the stomach where the enzymes activate but if the pH of any of those moving parts is acidic you will destroy the enzymes before they make it to where they need to activate.'
In addition to a novel case of GATA6 pancreatic agenesis, Sarah struggled with epilepsy, liver failure and autism.
Sarah took a turn for the worse three months ago when she had an increase in seizures which were taking her longer to recover from.
She had been seizure-free for the previous two-and-a-half years.
'Then towards the end of June, she became unwell with a winter cold and bounced back in a few days and was back to her normal chatty, smiling self,' Karina said.
The flu hit Sarah's family about three weeks ago, with the family isolating themselves to ensure she was protected.
'Then she became ill 10 days ago, she rested and we nursed her back to health, she was slowly getting her strength back and we had some treasured one-on-one time together and chats about her favourite Pokémon and going fishing on the weekend,' Karina said.
'On Friday evening, we had a homemade hamburger dinner together as a family, we watched The new How to Train Your Dragon. She went around and gave each of her siblings a hug, climbed into bed with dad for 30 minutes just laying with him and then came out to me for a hug and a kiss and told us it was bedtime.'
On the Saturday morning Karina went in to check on Sarah and found she had a bit of a cough.
'We did her nebuliser treatment which seemed to help, at 11.30am, she was still tired so we put her back on the nebuliser and I sat with her and watched her favourite Pokémon,' she said.
'I went to the kitchen to make a coffee and around (midday), she cried out, I ran to her room and found her not breathing.
'I screamed for (my husband) and we immediately started CPR and called for help. The paramedics arrived quickly and tried in vain for a further 45 minutes but we couldn't bring her back.'
Karina said she would be forever grateful for the precious moments she got to spend with Sarah before she lost her battle.
'I feel that she knew she was tired and used all her might and power to get just enough strength to give us those last few special moments together that she had with each of us, we just didn't know that,' she said.
'She passed at home with her mum, dad, sisters and brother. Her grandparents and uncle raced to us as quickly as they could.'
Sarah was laid to rest on Monday. A GoFundMe has been established to help pay for the funeral.
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