Ever since Sam’s seven-year-old daughter, Amara, started school, being struck down with a virus was so common that she thought it was all part of building her immunity.
“She would pick up a bug from school several times a term and have to stay home a lot,” the Perth mum tells Kidspot.
“We’ve taken her to doctors many times over the years. Little did we know her immune system was shot throughout all of that.”
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In September, 2022, Amara came down with an ear infection – but this time it was unlike her many other illnesses which had passed after a few days.
“No amount of antibiotics would get rid of it,” Sam, 38, says.
“She was getting worse and worse. It got to a point where she didn’t have the energy to walk up and down the stairs.”
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“She was so sick. If we’d waited, we would have lost her”
After two weeks and multiple trips to the GP, Sam’s instinct told her it wasn’t just an ear infection, and she begged her doctor to “please do something”.
Devastatingly, Sam’s hunch was spot on.
Within two hours of Amara’s blood test, she was rushed to a children’s hospital due to her haemoglobin levels being so critically low.
“It was supposed to be over 140, and it was only 34,” the mum-of-two remembers.
“She was so sick that if I had waited a couple more days, we would have lost her. It was touch and go for a while.”
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“There was finally a name for this horrible monster”
Amara, who is on the autism spectrum, was diagnosed with chronic kidney disease and was in stage four renal failure.
“I was terrified,” Sam says emotionally.
“It was the first of so many traumatic moments we would have in that hospital.”
Sadly for this little fighter, an even more life-threatening health battle would be forced upon her soon after.
In January this year, genetic testing showed Amara has cystinosis, a rare genetic condition of which there are only 2000 confirmed cases in the world. Both Sam and her partner, Simon, are carriers but their eldest child, Tiaan, has shown no signs of the disease.
“In one strange way we were relieved because there was finally a name for this horrible monster, and they could start treating it,” Sam says.
“We are hopeful we can fight this.”
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“If she can get a kidney, she can live a normal life”
Amara is currently receiving dialysis, and sadly, the treatment she is receiving has meant the grade 1 student has spent little more than two weeks at school this entire year so far.
“The medication that is saving her life constantly makes her nauseous, tired and so unwell.”
Sam and Simon are now doing everything they can to help Amara become well enough to be put on a life-saving kidney transplant waitlist.
“If she can get a kidney she can live a normal life – but with round the clock medication,” Sam, who is now her daughter’s full time carer, says.
“Without that, we don’t know what will happen to her. My biggest fear is losing her. It’s such an unknown disease.”
Throughout Amara’s illness, she has been supported by the Starlight Children’s Foundation – with the highlight of meeting her music idol, Ed Sheeran. It has made such a huge difference to her life that Sam is now an advocate for Starlight’s Tour De Kids challenge, which aims to raise $1 million for 25,000 sick kids with bike rides throughout September.
Originally published as ‘Within hours my daughter went from an ear infection to fighting for her life’
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