BATTLING cancer is one of the toughest challenges anyone will ever face. So imagine going through the ordeal as a young child

The pain and confusion of what is happening, and the endless hospital visits and stays, the disruption to a life which should be so simple and carefree.

But five children across Essex, who have all experienced the effects of a rare form of cancer, have had their courage and bravery recognised at an awards ceremony.

Noah and Dylan Edgar from Colchester, Evie and Dolly O’Neill from Frinton and Barney Baulch from Feering have been touched in different ways by retinoblastoma, a cancer which affects the retina of children predominantly under the age of six.

In recognition of their outstanding resilience, they have been named as CHECT Champions by the Childhood Eye Cancer Trust.

Noah, four, and Dylan, six, live in Ipswich Road, Colchester.

When he was 18 months old, Noah developed what doctors initially thought was either an infection or conjunctivitis in his right eye.

Further tests revealed he had retinoblastoma. The size of the tumour meant his eye had to be removed in 2015.

Noah now wears an artificial eye and continues to undergo regular check-ups at the Royal London Hospital to ensure the cancer has not appeared in his left eye.

His mum, Gemma Edgar, said: “One morning in the December he just woke up with a really red and swollen right eye.

“We took him to the doctors and they thought it was conjunctivitis but it didn’t really get better.

“We took him to Colchester Hospital and he was admitted for five days on antibiotics. It was two days before Christmas we were told we could go home.

“But his eye still never really got better and we could tell it was bothering him.”

The family went back to the hospital four times before it was found out he had retinoblastoma.Gemma, 33, said: “I don’t know if it was mother’s intuition but I just had a feeling something was wrong.

“I thought he had a brain tumour. When they first confirmed what it was a felt sick.

“I was a paediatric nurse previously so I knew a little bit about it.”

Noah coped amazingly despite when he had his eye taken out. He now attends Friars Grove Primary School with his brother.

Gemma said: “I was more worried than he was, I had all these horrible images in my head but he was good as gold.”

At the same time Noah was facing his own battle with retinoblastoma, his mum was also undergoing treatment for a brain tumour.

She said: “I was diagnosed the year before Noah was diagnosed.

“I had already had surgery and radiotherapy but I relapsed in November last year and had to have further surgery and chemotherapy.

“It was really difficult at times. Because of the tumour I can’t drive so my husband, Rob, has to do everything for us. There are so many hospital appointments.”

The emotional upheaval associated with having both his mother and brother undergoing treatment has been hard on Dylan who, nevertheless, continues to be a source of inspiration and support.

Gemma said: “Dylan is brilliant, he has found it quite hard to deal with especially with my tumour regrowth.

“I also have epilepsy and Dylan has seen me have seizures. I find it really hard as because of his age I don’t know how much I should be explaining to him.”

Other siblings who have been affected by cancer are Evie O’Neill and Dolly Baxter.

Evie, eight, and Dolly, five, live with their sister, Bella-Rose Baxter, seven, in Bemerton Gardens, Kirby Cross.

In February 2015, Bella-Rose was diagnosed with retinoblastoma after a routine visit to an opticians in Clacton revealed she had no sight in her right eye.

Their mum, Laura O’Neill, said: “When Bella left pre-school her teacher said she had a bit of a lazy eye, I had never noticed it before.

“I took her to the opticians and it went from there.

“She had a grade E tumour which is one of the worst. It was huge.”

The affected eye had to be removed by doctors in order to save her life, with the operation taking place just three weeks after that initial visit to the opticians.

She now wears an artificial eye.

Bella-Rose, who attends Hamford Primary Academy, was made a CHECT Champion in September 2015.

Her mum said: “At first she was fine, she would run about and she was the most outgoing girl.

“It was fine for the first couple of years but now she has got older she is more self-conscious about it.

“She is learning to cope but she is quite reserved. Physically she is doing amazing, it’s just emotionally.”

Over the past three years Evie and Dolly have been a tower of strength not only to their sister but the entire family.

Laura, 27, whose partner, Perry, also has a two-year-old son, said: “I’m really proud of them.

“When they were younger they wondered why she got all this treatment as a lot of my time is spent with her, but now they are older they are so supportive.

“They understand now and they have taken on a protective role.”

For Barney Baulch, from Feering, being in and out of hospital with his brothers is all he has ever known.

Clacton and Frinton Gazette:

Barney, five, lives with his brothers Felix, nine, and Leo, 12, in Inworth Road.

In 2009, aged just four months old, Felix was diagnosed with retinoblastoma and underwent intensive treatment to combat tumours in both his eyes.

Mum Louise Baulch said: “Like I did with my first child I would put Felix in his bouncy chair while I was drying my hair.

“He wasn’t taking any interest in the toys in front of him. I would hold up a toy and he just looked vacant.

“I told my husband Philip I thought he couldn’t see.”

He was taken to the Royal London Hospital where he was diagnosed with retinoblastoma.

He had two tumours in both eyes, but with chemotherapy things started to calm down. However, in 2013 his right eye had to be removed as the cancer

returned and was a threat to his life.

Two years later Felix underwent further extensive treatment to save his left eye which thankfully proved to be successful.

He is registered blind but can read large text up close, and has a white walking cane.

Louise, 47, added: “The hospital wanted him to have his left eye out. I wanted them to try absolutely everything rather than him waking up not knowing if it was dark or light.”

The Feering Primary School pupil has coped well and both Felix and Leo both became CHECT Champions in 2015.

Now it is Barney’s turn to receive the award.

His mum said: “Barney was born just before Felix lost his right eye.

“The first six months of his life were spent going in and out of hospital while Felix underwent his operation and subsequent treatment.

“He may only be five, but he knows all about his brother’s artificial eye and goes out of his way to do so much for him.

“He holds his hand to guide him when they go to school, he finds his toys for him at home. When we go to a park or a soft play that Felix hasn’t been to before, Barney will hold his hand and talk him through everything.

“It’s amazing to see someone so young look after his older brother. Receiving this award means so much to him.”

CHECT has three vital missions: to offer one-to-one support for families affected by retinoblastoma, to raise awareness of the signs and symptoms to prompt earlier diagnosis, and to help fund research into the disease.

Patrick Tonks, chief executive of CHECT, said: “Noah, Dylan, Evie, Dolly and Barney have been through so much in their relatively short lives but have also shown remarkable levels of courage and resilience.

“Rb causes an immense amount of upset and disruption but they’ve absolutely refused to let things get on top of them. All five children are thoroughly deserving champions.”

Each received a medal and a framed certificate at the Kalahari Theatre at Colchester Zoo.