LITTLE Noah Edgar plays with his big brother, Dylan.

Theirs appears to be a carefree existence, as they play on the sand, running from the waves.

But for Noah, and his parents Gemma and Rob, nothing could be further from the truth.

Noah was diagnosed with a retinoblastoma, a rare malignant tumour of the eye.

Still only 22 months old, he has already undergone surgery to have his eye removed as well as both chemotherapy and proton beam therapy in the hopes of killing any remaining cancerous cells.

He still has two more sessions of chemotherapy to go. Gemma is dreading it.

"He gets really poorly after the treatment," she said "but then has two good weeks before the next treatment."

Noah has been through the mill.

For his proton beam therapy, the family flew out to the University Of Florida Health Proton Therapy Institute in America.

There, doctors made a mask for Noah so the proton beam could be sent directly to the site of the cancer.

The treatment was carried out in case any cancer cells had escaped from the tumour before it was removed.

Every day, five days a week for four weeks, little Noah was then given a general anaesthetic to ensure he maintained completely still while the beam was fired.

"The proton beam therapy only took about five minutes but Noah was asleep for 45 minutes each time," said Gemma.

"We were so proud of him, he was brilliant.

"He coped with it so well, much better than anyone had expected.

"The only thing he did not like was missing his breakfast.

"He had to be starved before the treatment in the morning so when he came round he was really hungry."

Gemma said the prognosis for Noah was good. Time will tell.

"Once his chemotherapy has been completed, he will have to go to the Royal London Hospital every six weeks for scans," she said. "He also has a prosthetic eye which will need to be replaced as he grows."

Gemma's own health problems have taken a back seat while Noah has been receiving treatment.

Former paediatric nurse Gemma was diagnosed with a brain tumour in October 2014.

The tumour was a Grade 4 glioblastoma multiforme – the most aggressive type of tumour.

Surgeons at Queen’s Hospital, Romford, removed as much of the tumour as they could and she underwent six weeks of radiotherapy.

She has regular MRI scans to check for signs of regrowth. She said: "I had my last scan in January and nothing had changed.

"It was the same time as Noah was diagnosed.

"I don't really think about my own health because I was focussing on Noah.

"I have to go back in September and hopefully they will still be no change."

Gemma, 31, of Ipswich Road, Colchester, said life now revolved around taking Noah to numerous hospital appointments.

But there are signs of normal life. As Gemma talks, Noah and Dylan, who is four, are playing.

"When Noah is well enough, he goes to nursery and he still loves to play - and fight - with his big brother."

  • Gemma and Rob's family and friend are raising money to help charities raising awareness and seeking treatments for brain tumours and eye cancer.

Gemma's dad and brother, Andy and Lee Relf, are taking part in the Celtic Crossing in September, which will see them compete in a kayak event in the stretch of the Atlantic Ocean from the Isles of Scilly to Sennen Cove in Cornwall.

The distance is more than 50km in what is considered one of the most treacherous stretches of ocean in the world.

Lee said: "The crossing would be challenging for any experienced kayaker but for my dad and I, it's a massive undertaking as we are complete amateurs."

So far, fundraising for Brain Tumour Research and The Childhood Eye Cancer Trust has topped £5,000 but the pair hope to raise more money.

Lee is also undertaking a themed cycle ride, The Knight Rider Challenge, with friends Lee Chenery, James Weller, Dan Mayhew, Ian Marjoram, Tim Wood, Kieran Martin, Sean McCormack, Matt McGivern, Tom Nunn and Dom Newby.

They will be cycling dressed as medieval knights along a 130 mile route visiting four castles in Suffolk - Framlingham, Eye, Bungay and Orford.

Lee said: "We will be stopping for regular refreshments of mead along the way.

"We hope our attire will draw some attention to help raise as much awareness and funding as possible for the Childhood Eye Cancer Trust."

So far, the challenge has raised nearly £3,500.

To support either fundraiser, go to justgiving and search for Lee Relf to find the Knight Rider Challenger or the Celtic Crossing.

Rob is also raising funds through a football match being staged between Essex Police and Colchester United Veterans at Stanway Rovers in New Farm Road, Stanway, on August 7. Tickets cost £5 and can be bought on the door. Money raised will go to the Childhood Eye Cancer Trust.