Bubbly nine year old Chelsea from Rosebud, Victoria was a picture of health until falling ill during a family trip to Bali in August to September, 2015.
After returning home, Chelsea’s mum, Mandy, 46, watched helplessly as her daughter’s health continued to decline. Concerned for her daughter’s welfare, she took Chelsea to the doctor, who referred her to Monash Hospital, Melbourne, where she was subsequently diagnosed with the ultra-rare, potentially life-threatening blood disease, atypical haemolytic uraemic syndrome (aHUS).
This is Chelsea’s story.
While holidaying with her family in Bali during August and September 2015, an older child grabbed Chelsea around the stomach, which triggered severe pain. She was taken to hospital, where they did an ultrasound on her organs, and advised everything looked fine, before letting her return to the holiday with her family.
When Chelsea and her family returned home on Wednesday, September 9, 2015, Chelsea was extremely unwell and spent the next few days sleeping while her body attempted to battle a then unknown illness.
“Chelsea slept most of the day when we got back home, and was still really sick the next day, so I kept her off school,” said Mandy.
“The following day (Friday), Chelsea woke up screaming and vomiting, so I kept her in bed all day. But on the Saturday however, after showing no improvement, I took her to see the doctor.
“The doctor initially suspected she may have developed appendicitis, so referred her to Monash Hospital,” Mandy said.
Chelsea was subsequently examined and tested for various illnesses, and was mistakenly informed she had pancreatitis, while the doctors awaited her test results.
Two hours later, Chelsea was diagnosed with aHUS and transferred to the intensive care unit (ICU) immediately.
“I’d never heard of aHUS before, so was unaware of what it meant. But the doctors took Chelsea to ICU for a few hours, before releasing her and preparing her for a blood transfusion, which they did a few days later” said Mandy.
On Monday, September 14, 2015, Chelsea was granted a lifeline – access to Soliris for the treatment of her aHUS.
“Everything went up hill for Chelsea after she received her first dose of Soliris.
“The treatment was fantastic and allowed her to bounce back to being herself,” Mandy said.
Since accessing Soliris, Chelsea has been able to continue life as usual, visiting hospital only on a fortnightly basis to receive her treatment infusion.
“Since being diagnosed with aHUS, Chelsea has grown a little bit anxious. She gets concerned about who would look after her, or take her to hospital, should something happen to me.
“She over-thinks everything as well. Should she choose to live overseas in London when she gets older, she worries about how she would access her treatment, as she believes she can only get it here [Australia],” said Mandy.
“Before her aHUS diagnosis, she’d never really asked those sorts of questions.”
To further compound her anxiety, Chelsea recently underwent a series of genetic tests as per the Federal Government’s treatment criteria, post her ‘extended initial 1’ at one year, in which patients are required to come off treatment to be assessed for their response to the therapy. Chelsea is nearing a year on treatment and is set to lose access to Soliris in the coming weeks.
“When the genetic test results come back, Chelsea will be taken off Soliris to see what happens.
“I have mixed feelings about her coming off treatment, and am really anxious, but I also know that the aHUS could lay dormant, and I’m hoping the disease does lay dormant for her,” Mandy said.
Mandy is however, forever grateful to those who campaigned so vigorously over many years, to enable her daughter to rapidly access Soliris post- aHUS diagnosis.
“It breaks my heart to think of those people who weren’t, or aren’t able to access Soliris. Just thinking what they have to go through is terrifying.
“Everyone living with aHUS should be able to access this treatment,” said Mandy.
“It baffles me as to why they aren’t all able to. Sure it’s expensive, but you can’t put a price on someone’s life.”