Grieving family's £85k fundraising helps rare disease research

Friends and family of a 25-year-old woman who died from a rare disease have raised £85,000 to help fund research.

Daisy Catterall, from Cirencester died last year from haemophagocytic lymphohistiocytosis (HLH), a rare condition in which the immune system becomes dangerously overactive and attacks the body's own organs and tissues.

Since Daisy's death, money has been raised for research into HLH at University College London Hospital, helping secure a grant that researchers said "wouldn't have been possible" without the fundraising.

Her mum, Rachel Catterall, said Daisy "lived life to the full" and was "loved to bits" by everyone who met her.

Dr Jessica Manson, a consultant rheumatologist at University College Hospital and lead for HLH, said the disease occurs when a person's immune system fights off an infection or cancer but then does not "switch off" and instead starts to attack the body's own cells and tissues.

Manson said symptoms included very high temperatures, fever, a drop in blood pressure, confusion and rashes.

She said these symptoms could often look similar to sepsis, which is why it was important that the diagnosis was correct.

"The treatment requires suppression of the immune system, which seems counterintuitive if you're treating someone who you think might have an infection," she said.

Daisy's friends and family have fundraised for the hospital through a series of challenges such as a Tough Mudder, darts competitions and mountain climbing.

Her mum said those taking part in the challenges had been following the mantra: "Do it for Daisy."

She said: "Everything we do, all her friends who are pushing themselves outside their comfort zone, it's all 'Do it for Daisy'."

Dr Alexandra Oppong, the scientist whose work Daisy's family and friends have been helping to fund, has now been awarded a research grant of £670,000 from the Royal Society.

Manson said the grant "wouldn't have been possible" without the fundraising from Daisy's friends and family, who she described as "unbelievable people".

She said the money would go towards research into what causes HLH, how to identify the disease, and how to better treat it.

Rachel said she hoped the fundraising would help others in the future and leave a positive legacy for Daisy.

"Daisy was just absolutely full of life.

"She was constantly doing something. She packed a lot into her 25 years," she said.

"We can never bring her back, and nothing will change what happened to her, but if something positive can come from the tragedy of losing her, then it's helping scientists understand HLH.

"Hopefully, helping someone else's daughter, son, mum, dad, partner or friend," she added.

Follow BBC Gloucestershire on Facebook, X and Instagram. Send your story ideas to us on email or via WhatsApp on 0800 313 4630.