Join Larsen's Pride: buy a big cat for poorly children this Christmas
The parents of a five-year-old boy who died after being diagnosed with a rare brain tumour are urging people to buy a cuddly cat for Christmas - and support other children going through the same thing.
Larsen Roberts died on 17 December 2019. He had a high-grade medulloepithelioma (MEPL), a highly aggressive embryonal tumour that is so rare, there are fewer than 10 known cases in the world.
His mum and dad – Holly and Lyndon – have just launched Larsen’s Pride, a charity, to raise money to support children with brain tumours and to help fund research. Instead of buying Aunt Aggie another scarf and gloves set this Christmas, and Uncle Roy a bottle of Scotch, they want people to donate a cuddly toy to youngsters in Nottingham Children’s Hospital.
“We know the cats can bring a sense of safety and security at a very scary time,” said Holly.
Larsen adored big cats. He fell in love with them after watching BBC’s Big Cats About the House. He started watching David Attenborough and wanted to be a zoo-keeper when he grew up.
When Larsen was diagnosed, his grandma Frances Clegg bought him a giant Jellycat snow tiger to comfort him. Snowy never left Larsen’s side, even lying beside him in the MRI scanner.
“Larsen loved big cats,” said Holly. “He was brave and courageous throughout his treatment – like a lion and we are his pride – a family offering courage and comfort to children going through what Larsen went through.”
With support from family and friends, the family has raised £12,000 for Clic Sargent, now known as Young Lives v Cancer, and £6,000 for the Aspinall Foundation, an animal conservation charity that Larsen visited. Larsen’s auntie, Fran Bradburn, raised £1,600 for ward E40 at Nottingham Children’s Hospital by abseiling down the QMC.
On Larsen’s birthdays, the family have donated giant Jellycat cuddly toys to ward E40, thanks to donations from family and friends. Almost 80 children who have been diagnosed with a brain tumour have been given a Jellycat.
The charity will also help fund research into kinder paediatric treatments and – ultimately – a cure. “Treatment can be brutal,” said Holly. “There is no child-friendly option.”
Larsen was initially diagnosed with a lazy eye. Holly knew there was more to it and pushed for a second opinion. The family was then told he had a benign Optic Pathway Giloma, observed for months and given chemotherapy.
After a year, when the tumour was still growing, a biopsy delivered the devastating news that Larsen had the extremely rare medulloepithelioma (MEPL). In the few cases known about worldwide, there were no known survivors and no established treatment.
“That’s when things got really scary,” said Holly.
The operation carried huge risks; it was successful, removing over 99% of the tumour in an 11-hour brain operation.
“Larsen lost his right eye but we really thought he’d be ok. But within days the side effects started. He had hydrocephalus, meningitis, twice and had to have a shunt fitted,” said Holly. Larsen left hospital a week before he was due to start school – and he was really excited.
Doctors wanted him to have intensive daily radiotherapy over six weeks, which meant putting him under general anaesthetic each day: he wouldn’t have been able to start school.
“We practised him keeping still, with the radiotherapy mask, until we persuaded the hospital that he didn’t need to have a daily general anaesthetic.
“So Larsen went to school every day. And when he got home, he’d get changed, get his scooter, and we’d scoot off to City Hospital, which was just over the road from where we lived. He took it all in his stride.”
But a follow-up tumour showed that although the radiotherapy had worked, new tumours were growing on the top of Larsen’s spine. This time, it was inoperable. Larsen was given chemotherapy.
“You don’t have a choice,” said Holly. “It’s torture – it’s not developed for a child. The side effects of this chemo wiped out all his platelets and stopped his blood from clotting, which led to a brain haemorrhage from which he couldn’t recover.”
The family is now living in Pembrokeshire where they holidayed as a family two or three times a year.
They moved after Holly realised that she couldn’t walk Jesse (Larsen’s little brother) through the same school gates Larsen had walked through – full of excitement – two years earlier. She couldn’t face seeing Larsen’s classmates lining up next to Jesse’s.
“We feel really close to Larsen here in Pembrokeshire, it’s where we made so many happy memories.”
Every year around 500 children are diagnosed with a brain tumour in England and Wales, and many will go through similar experiences to Larsen.
“Ultimately, we want to have a big Jellycat for every child diagnosed with a brain tumour in England and Wales. But Nottingham will always come first,” said Holly.
“And while I have some anger about the misdiagnoses, the children’s nurses are the best. We will be forever grateful to Julie Roberts, Play Specialist on E40, and to Heather and Holly, Larsen’s named nurses.
“And also to Simon Howarth, who performed the very risky surgery – he didn’t have to do it but he did, successfully; to the receptionist who listened to me, and helped me get Larsen tested that same day – I am so grateful. And to Young Lives vs Cancer, who were such a tremendous help and support.
“I will never - in my life - meet as incredible people as I did when Larsen was ill.”
Buy a cat for Christmas
To donate a soft toy, visit larsenspride.co.uk. Toys are either £25 or £45 and will be sent directly to E40 Nottingham Children’s Hospital to be handed out to newly diagnosed children. The donor will receive a gift certificate.
Big cat Christmas cards are also for sale, at £10 for a pack of 10. So far, Christmas card sales have raised over £500.