Charlie Carter-Bates was a normal, happy go lucky child who loved rhinos, comedy shows and singing along to the Black Eyed Peas.
But weeks before he celebrated his seventh birthday in March 2010, he was diagnosed with a rare brain tumour so agressive it cost him his life just months later, in November.
Nearly four years on from his untimely death, his parents, Karen Carter and Dean Bates, of Warrens Shawe Lane, Edgware, say they finally have the strength to start raising money and awareness in Charlie's name.
Charlie first began complaining of headaches and vomiting in the summer of 2009 aged six, but despite repeated trips to the doctor he was diagnosed with a migraine or a stomach bug.
When a brain scan revealed he had a tumour, his parents were given the devastating news that he had just a 25 per cent chance of survival.
He was referred to Great Ormond Street Children’s Hospital and began a course of radiotherapy and chemotherapy days after turning seven.
Ms Carter, 32, who has three other children with Charlie’s father, said: “It was madness, it was a big whirlwind and it wasn’t quite sinking in.
“They told me he had the most aggressive tumour possible. What do you do when your child is given that kind of devastating news? How are you supposed to protect him?
“Charlie was amazing. He soldiered on. He lost all his hair and he asked me to show the doctors and nurses a photograph of how he 'really looked'. It was heartbreaking.”
During his treatment, Charlie put on a brave face and still sang along to his favourite musicians – the Black Eyed Peas and Mika.
The former Broadfields School, Edgware, pupil also received a phone-call from his idol, actor Adam Sandler, got up close to a rhino - his favourite animal - and spent a day meeting the Toy Story characters.
Ms Carter is now a full-time mother to her other children, Annabelle, seven, who has fond memories of her brother, Tristan, four, born weeks before Charlie's diagnosis and 18-month-old Aurora.
She said: “I felt so empty when he died. My other children have kept me going.
“If he were still here today, he would be graduating primary school and getting ready to start the rest of his life. It still hurts, I still feel numb over it.”
Even though brain tumours kill more people under 40 than any other cancer, the disease receives less than one per cent in grant money for research purposes. A day of research costs £2,740.
His family have now set up an umbrella group under the Brain Tumour Research charity named Charlie Charges On, in honour of his favourite animal – the rhinoceros.
And despite originally setting a goal of raising £5,000 a year when it was set up in February, they have already amassed £4,500 a year in donations.
Broadfields School and Whitings School have held various charity events in Charlie’s honour and Ms Carter is also planning a charity ball in October, in the Hilton Hotel in Watford.
She said: “The best gift I could ever be given is a cure.”