The mum of a toddler who tragically died after a long battle with his health has described her son as “a real life superhero”.

Three-year-old Raffy Holliday from Deal died on March 29 as a result of Human herpesvirus 6 (HHV6) related encephalitis - inflammation of the brain.

Being diagnosed with cancer when he was less than a year old, he underwent experimental treatment to battle the ailment which has since become mainstream internationally.

Little Raffy leaves behind mum and dad Imogen and James Holliday, brothers Oliver and Arthur, and sister Paloma.

Imogen describes Raffy as “the most perfect, beautiful little boy”.

The 35-year-old said: “He absolutely is a real life superhero, and he was the happiest person I’ve ever met

“He was a ray of sunshine. We never had to raise our voice or tell him off once.

“Raffy was just the most perfect, beautiful little boy, so full of gratitude.

“He was so bright and full of love and life even though he had so much to contend with.

“He spent maybe half of his life in a hospital room and he just got on with it. He was such an inspiration to us.

“Even up until his last breath, I was still hoping he could turn it around - he was such a fighter and I thought if anyone could do it, it would be Raffy.”

Born on June 12, 2019, Raffy was diagnosed with MPAL - mixed phenotype acute leukaemia - in May 2020 and had multiple rounds of chemotherapy and experimental immunotherapy to fight three different types of cancer.

The success of the immunotherapy in treating the cancer saw Raffy become the first Great Ormond Street Hospital (GOSH) patient to be put into ‘The World Genomic Testing Programme’.

Designed to find the exact mutation that caused his leukaemia and at what point, the results of Raffy’s treatment were given to then-health secretary Matt Hancock and has been credited with revolutionising MPAL treatment.

“Because of Raffy, there is now funding for kids in the UK with MPAL to have immunotherapy and a doctor at GOSH told us that’s something that’s being adapted internationally,” Imogen said. “That was so nice to hear.”

Although the immunotherapy treatment was a success, a bone marrow transplant in September 2020 led to issues such as being immunocompromised and the contraction of HHV6.

As a result of HHV6 in his bone marrow and blood, Raffy would suffer from fevers, gastro issues, and other illnesses, and was kept on immunosuppression for two years.

He was an inpatient at GOSH for the six months before his death, and towards the end of his life was also diagnosed with an infarcted spleen.

But for Imogen, it is the little things about her son that she fondly recalls rather than the illnesses he had to fight.

She said: “Raffy’s favourite topic of conversation was ‘What’s your favourite colour?’, he’d always ask everyone that.

“He could list everyone’s name and their favourite colour - he’d do it in the same order every time.

“He loved his big brothers so much. He’d go to the park with his dad James all the time. That and the bookshop were his two favourite places.

“He absolutely loved school. His idea of school was very different to what it is for other kids but he’d have a teacher come round from 10-11 to his room at the hospital.”

Imogen described the last few months of Raffy’s life as “traumatic”, a feeling only exacerbated by disturbing comments made by some palliative care workers at the London hospital.

While waiting in a bone marrow transplant ward in February, Imogen described how she overheard "sick individuals laughing" as they cracked jokes likening themselves to the Grim Reaper while waiting to meet her dying son.

Bosses at the hospital confirmed an investigation was launched following Imogen's complaints, and said the comments were "indefensible".

Despite this, Imogen was full of praise for the team that looked after Raffy in his final days.

“I can’t even articulate how desperately sad, how traumatic it was to see him decline,”she added.

“It really threw us when things changed so drastically at the start of February. We thought we were on the way to getting him home.

“Things just took a horrific turn. We were told when he was put into palliative care he would have a couple of days but he lived for six weeks and four days.”

Discussing her family’s reaction to the aftermath of Raffy’s passing, she said: “We have good and bad days. We can all be fine one minute and in floods of tears the next, wherever we are.

“We’re an open family, which has really helped things.

“It’s important to talk about our feelings and anxieties. It’s not a normal thing to lose a sibling at a young age.

“We can sink or we can swim, and I choose to swim, I choose to be a bit more like Raffy.

“That’s what we say in our house if we’re having an off day - let’s be a bit more Raffy. That’s how brilliant to us he was.”

Following Raffy’s death, Imogen and the family have started up a campaign group called RedDuck.

Taking its name after Raffy’s favourite colour and animal, RedDuck aims to raise awareness for HHV6 and make changes to the way it is treated by medical professionals.

Campaign days are currently being organised with the first set to take place in Canterbury this Sunday.

Imogen said: “We’ve been really lucky. We have a wonderful community taking a red duck and spreading our message. We have a fantastic artist and makers auction coming up in July and we’ve launched a kids drawing competition.

“Raffy’s not here to take part but all these children will be drawing beautiful ducks for him.”

RedDuck is currently raising awareness through its Instagram page @redduck_hhv6 and has a gofundme organised by Imogen.

She added: “If we could prevent one family from going through this then we’ll have done well.”