A mum has shared her daughter’s symptoms which triggered a deadly disease which took her life within a month.
When Rachel Catterall’s daughter, Daisy, phoned her one morning complaining of swollen glands in her neck, neither of them thought much of it.
But just over a month later, the 25-year-old passed away.
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It turns out her flu-like symptoms had actually triggered a rare and life-threatening condition, hemophagocytic lymphohistiocytosis (HLH), in which an overactive immune system attacks the body’s organs and blood cells.
Rachel, a painter and decorator, had never heard of this before her daughter’s passing – and is now sharing her story in a bid to raise awareness of this deadly disease.
“I was watching the doctors work on her when they said she couldn’t be saved,” the mum-of-three, from Cirencester, told Need To Know.
“I could see they were right.
“Her body had been ravaged by this hideous disease.
“Basically, her own body was killing her.
“When they called time, I was absolutely devastated.
“I could see there was no chance for her, though.
“It all happened in the blink of an eye.”
Daisy, who worked for the local council, had just bought her first home with her long-term boyfriend, Matty, now 27.
While travelling the world together, they were making plans to get married and start a family.
An avid gym-goer, Daisy was very fit, and the 55-year-old recalls her daughter never being ill in her entire life.
Until the aforementioned phone call in January 2025.
Rachel said: “I really didn’t think a lot about it at the time.
“The doctors told her it was a viral infection and gave her some antibiotics.
“Over the next few weeks, she was back and forth with them.
“She had gotten over the swollen glands, but then the achy joints started, as well as rashes.
“They all said it was the same thing and that she had nothing to worry about.
“Although she was under the weather, I still wasn’t worried, as she was just a fit and healthy woman in her 20s.”
Then, the week before Rachel and her husband, Sam, also 55, were due to go on a trip to Cambodia and Vietnam, their youngest was admitted to hospital.
Rachel said: “Her bloods were not how they should be; the count was abnormal.
“Over the next few days, I sat with her in the hospital.
“She didn’t appear seriously ill – if anything, she was just like her normal self.
“I had a bit of wobble about going away, but because she loved travelling so much, she was adamant we were going.
“The day before we went away, she left the hospital and was due to be treated as an outpatient.”
The pair headed off on their big holiday with the thought that their daughter was safe and sound.
However, two days into their trip, they got a call to say Daisy was back in hospital.
She said: “I was on FaceTime with her when the consultant came in, and I asked her to leave me on the call so I could hear what he had to say.
“He said he wanted to do a bone marrow biopsy, which isn’t done unless they are looking for something bad.
“I began looking for the first flight home.
“Daisy kept saying we didn’t need to come home – but mother’s instinct was telling me otherwise.”
When they jetted off, their daughter appeared the same as usual; chatting and laughing away.
But after landing on UK soil, Rachel’s phone wouldn’t stop pinging.
Daisy had been transferred to critical care.
She said: “It was such a shock.
“We raced from the airport to the hospital.
“As we arrived, I saw her lying there, being given so much medication.
“The doctor pulled us aside and told us of the diagnosis.”
Rachel, while not aware of HLH prior to this, had Googled the condition when it was mentioned during past tests – as it was originally ruled out.
She had to stop reading, as the condition was “too awful” to picture her daughter suffering with.
Daisy, despite battling for her life, was only worried about whether she’d be able to make her trip to the Philippines.
At two in the morning the following day, the parents got a call to say she had to be put on dialysis, as her kidneys were failing.
Following this, Daisy was placed in an induced coma to help her body recover.
Rachel said: “We told Daisy they were going to put her to sleep, and when she woke up, she would be going to the Philippines.
“Staying positive while telling her this, when inside I was devastated, was the hardest thing I’ve ever done.”
A few hours later, she went into cardiac arrest – and on 22 February 2025, at nine in the morning, Daisy lost her life.
Since her passing, Rachel, as well as other family members and friends, have shared their efforts to raise awareness of the disease in the hopes nobody will suffer as Daisy did.
She said: “There are so many people that could have died from HLH, but may have been diagnosed with something different.
“It’s so important that when people come in presenting certain symptoms, doctors think outside the box and test for it.
“Daisy dying is a massive loss to so many people.
“She always had lots of friends and had grown up to be an amazing, kind and generous young lady.
“I’m so proud of her.
“Everyone who knew her, or met her, loved her.”
Now, they’ve created a group called “Daisie’s People” to help raise funds for the team at University College London Hospital who were overseeing her care.
So far, they’ve raised £86,000.
Over 500 people attended the 25-year-old’s funeral; a testament to her character.
And to embrace her daughter’s passion for travel, her ashes are being scattered across the globe by family and loved ones – so far including Australia, Iceland, Spain, Thailand, Cyprus, Gozo, and, of course, the Philippines.
Rachel added: “I’m so glad Daisy lived a life as she did.
“She squeezed more adventures and fun into 25 years than most people do in a lifetime.
“She inspired so many friends and family to get out there and live their lives to the fullest.
“I hope she will continue to inspire everybody to do the same – as you never know how long you’ve got.”
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