Madalyn Massabni had just celebrated her 19th birthday in March 2017 on a trip home from university when she fell ill with gastro-like symptoms.
Within 36 hours she was dead, having suffered complete organ failure, from Toxic Shock Syndrome (TSS) the family says was potentially triggered by a popular brand of tampon.
Her mother Dan and brother Georgie have set up a foundation in Maddy's honour, to raise awareness about the "underdiagnosed and underreported" syndrome in the hope that others can be diagnosed early in order to save lives.
Her bereaved mother Dawn told the UK Sun that Maddy arrived home from a local university where she was studying fashion design, so she could celebrate her birthday with family.
"We had visited her brother, Georgie, and - as always - on March 27 for her birthday we went for a meal. She was well throughout the meal but on the way home she started feeling ill."
As the evening continued, Maddy's condition worsened, but Dawn didn't see a cause for alarm just yet because the symptoms were common ones for gastro.
"Maddy arrived home and had diarrhoea, a fever and vomiting. We both thought it was just a bug - the kind we've all had before. Still, I wasn't unduly concerned as she was a really healthy young woman who exercised and ate well. There was no reason why she should have been so ill," she said.
On the morning of March 29, however, Maddy was in a grave state.
"She could hardly move. I got her up to walk and she moved just a few feet but she was like a robot, barely able to function. Then, within minutes, she had deteriorated rapidly. She was dying. TSS ravages a body within days and that is what happened to Maddy," Dawn said.
The paramedics were called but it was too late for Maddy, who died in her mother's arms.
"I had my arms around her saying, 'Don't leave me, I love you'. She died there, in my arms, in her bed. It was awful."
TSS is very rare - only 40 identified cases in the US in 2016, reports PEOPLE - and is caused by either staphylococcus or streptococcus bacteria, which usually lives harmlessly on the skin and within the mouth and nose.
Problems arise when this bacteria releases toxins into the bloodstream, and can cause death if left untreated.
A simple course of antibiotics effectively treats the infection if diagnosed early.
The Conversation reports that Australia's statistics of TSS are probably similar to the US, but as it's not a 'notifiable' disease here, there is no local information available. In the US the rate is "0.3 to 0.5 per million people."
The Healthdirect webpage on TSS states, "TSS can affect anyone. It is more common among women when they are menstruating, but there is no evidence that tampons cause TSS. It is caused by bacteria."
Dawn and son George have now established foundation Don't Shock Me Maddy Massabni Foundation for Toxic Shock Awareness
The foundation's mission is to use the funds to educate people about the condition.
"The money raised pays for travel and associated expenses to fulfil the mission of speaking to and educating young women at colleges and high schools throughout the United States about the symptoms of toxic shock and risks associated with tampon use."
"She was my little girl and my best friend. Along with her brother we were a team," said the heartbroken mum.
Of Maddy's death, Dawn says she couldn't leave the house or drive her car in the year afterwards, and she still she finds it difficult to cope with the memories.
"I still have nightmares about that. No one wants to say goodbye to their child."
Now together with her son George, she is using her grief to take action.
"Knowing the signs and symptoms and being aware — and being able to express them to a doctor to get immediate help — will save your life," she said, adding that early detection and antibiotics is the key.
"This doesn't have to happen to anyone. I don't want any other family to go through this kind of tragedy that is so preventable, and to suffer and hurt every day like we do."
Recognising the signs
TSS can cause a number of symptoms, including:
- a sudden high temperature (40°C or above)
- aching muscles
- low blood pressure
- red eyes, mouth and throat
- a red rash like sunburn found on the hands and feet that peels.
If you have any of these symptoms you should contact your doctor or call healthdirect on 1800 022 222 for further advice. Also see the website for ways you can lessen your risk of TSS.
Photo: Don’t Shock Me/ Facebook