‘We were so lucky to have him’ - Tribute to brave Finnbar and hopes for more research in his name

Finnbar Cork. Picture: Tristan and Claire Cork (Image: Archant)

Out exploring on his bike, playing with schoolfriends or keeping a watchful eye over little sister Nell, he was, his family says, a 'sociable, happy little boy'.

But after his medic parents noticed he was having dizzy spells, tilting his head and, later, suffering headaches and nausea, alarm bells began to ring and, amid GP trips and referrals, they battled for a diagnosis.

In March, it came – a brain tumour.

On Friday, despite months of chemotherapy and hospital visits, Finnbar died at home surrounded by his loved ones.

Finnbar Cork. Picture: Tristan and Claire Cork (Image: Archant)

Now, his parents, Tristan and Claire, who live in Hethersett, are campaigning for greater research and funding into brain tumours, which they say are 'woefully under-funded and under researched'.

Paramedic Mr Cork, 34, said: 'Finnbar fought this with every ounce that he could give and so did we. We fought everything with 24/7 care and made sure he had as nice a life as we could.

'He didn't lose a fight. He didn't lose a battle. He didn't not fight hard enough. The fact is that he was given a death sentence. When you are swimming against a tide like that, there's no hope.

'It's an example of how unjust the world is – brain tumours are one of the most common cancers in children and young adults, yet there is so little research into them.'

The couple – who also have four-year-old daughter, Nell, and 12-year-old son Alfie – said in the nine months from November, when symptoms began, the Woodside Infant School pupil lost much of his speech and the ability to walk, eat or even sit up.

'He was such a sociable, happy little boy,' Mr Cork said. 'He loved being outside and doing things and loved being with his family, just like every other five year old.

'I don't think you can even describe the pain of watching your child go from well, running around and happy to being as he was within just a few months.'

Finnbar's rare grade two astrocytoma was unusual in someone so young and, unlike many tumours which form in a single lump, was diffuse – spread out, making it more complex to treat.

After 10 weeks of chemotherapy, doctors admitted that the tumour, initially diagnosed as low grade, could instead be high grade – and that there was nothing more they could do.

Refusing to give up, the couple pushed for radiotherapy, which began in June and not only extended Finnbar's life, but led to signs of improvement in his final weeks.

The couple are now urging other parents to educate themselves on brain tumours and the symptoms – and, if they have concerns, not to take no for an answer.

Mrs Cork, a nurse, said: 'Tristan had this niggle that things weren't right and you have to trust your instincts.

'People have to be strong enough that if you are worried, fight for it. Don't be afraid to ask for a second opinion.

'We both work in the field and felt like we knew the system pretty well, but we were completely unarmed. We had to learn quickly and try to understand what it was we were dealing with.'

She said it was also about reminding healthare professionals that 'rare things do happen'.

'If you go through 100 cases and in only one of them it's the worst case scenario, but you've caught that early, think of the difference you've made to that person, and their loved ones.'

Mr and Mrs Cork – who praised the 'amazing' support of the Sick Children's Trust and East Anglia's Children's Hospices – one day hope to channel their grief into supporting other families dealing with brain tumours.

'The pain you feel is awful, we are absolutely devastated, but we have been grieving all year,'

Mrs Cork said. 'I was grieving in March that he wasn't going to school. We have spent the last eight months of our lives stressed, in tears, devastated. But we were just so lucky to have him.

'He held all the cards – he could have said I've had enough at any point, but he didn't. He was so brave.'

• A memorial service open to the public is being planned for early September at Hethersett's St Remigius Church.