When teenager Amy Owens’ little cousin Ethan was diagnosed with retinoblastoma, she wanted to do her bit to let more people know about this rare cancer….

In the midst of preparing for her GCSEs, Amy Owen has also devoted her time to raising awareness of retinoblastoma.

The schoolgirl was motivated by her cousin Ethan Warman, who was just under two years old when he was diagnosed with retinoblastoma, after his mum noticed a white glow in his eye one evening when brushing his teeth.

Just a week later, Ethan’s parents were told he had retinoblastoma and two days after that, he had his eye removed. His family are now campaigning to raise awareness of this eye cancer and its symptoms.

Amy really wanted to play her part, so she wrote a presentation for her GCSE English Language assessment at school. The whole class was moved to tears by it and she received a distinction for her work. Well done Amy!

When she sent it to us, we thought it was so fantastic that we had to share it with you too…

Amy’s presentation

I am going to start today by asking you a question…

Do you know a relative or friend who has lost an eye to cancer? Probably not.

1 in 20,000 babies are diagnosed with retinoblastoma in the UK each year. Retinoblastoma is the name for cancer of the eye. It is a rare, and potentially fatal, form of tumour, accounting for approximately three per cent of all cancers in children under the age of five. The tumours start in the child’s retina, which is the light-sensitive layer of the eye that enables them to see.

This condition may affect one or both eyes of a child, the pupils may develop white spots or even appear white in appearance. In flash photographs, a white glow is often seen in the eye and the pupil may look distorted or white instead of the ‘red eye’ that is typically observed in photographs taken with a flash.

However many photographers actually edit photos if they can see this as they think it’s just a glitch in the photograph. This shows just how uneducated people really are about this life-changing cancer.

The Childhood Eye Cancer Trust (CHECT) is a UK charity dedicated to helping people affected by retinoblastoma. They provide support and information to families and individuals, fund research into the prevention and treatment of retinoblastoma, raise awareness among health professionals and the public and also influence policy to improve services for patients.

I’m telling you all of this because they have in fact helped our family.

This is my second cousin Ethan. Can you see cancer in either of his eyes? Neither could we.

However, he was diagnosed with retinoblastoma in September 2016 just months after undergoing surgery to repair his cleft lip. His mum noticed a strange white reflection in his right eye whilst she was brushing his teeth.

The following morning his parents took him straight to the local minor injuries clinic where they were told to go to the opticians. As soon as the optician examined Ethan’s eye they said they were going to refer him to Kidderminster Hospital’s eye department. Ethan’s mum said: “at this point we were starting to panic”. Then we all knew, it was something serious.

After visiting Kidderminster Hospital, the doctors examined his eye and referred him to Birmingham Children’s Hospital, one of two specialist centres for retinoblastoma in the UK. There he had his eye examined under general anaesthetic.

At this point his mum said: “we were still clinging on to the hope that it could be a false alarm, nothing could prepare us for the news that Ethan had retinoblastoma”.

My little cousin had got cancer. It was devastating. We then knew that he could lose his eye, but it could have spread through his whole body. The question was, were we going to lose him?

Ethan had a grade E tumour, which is the worst possible grade, and his retina was totally detached. His whole eye was practically a tumour and he had slowly been going blind in that eye for months.

Just 48 hours after being diagnosed Ethan was back at the hospital for surgery to remove his right eye. We had no time to process this information. He now needs to wear an artificial eye for the rest of his life.

Then three weeks later, he had his central line fitted, which administers all of his chemotherapy and had his first lot of chemotherapy just two days after his second birthday. He needed four rounds of chemotherapy which kills not only the bad cells but the good cells too, so he had no immune system. On top of that he also needed blood and platelet transfusions.

It’s been a hard few months for our family but we can’t believe how well Ethan has coped and he has been happy and smiling all the way through. He will still have to have examinations under anaesthetic every two to three months for at least a year to make sure the cancer doesn’t return.

On 17 June my dad and I will be taking part in the Chepstow 5k Bounce Run in order to raise money for The Childhood Eye Cancer Trust and to raise awareness as we really want more people to know about the signs and symptoms of retinoblastoma.

We really want you to take away from this speech some information about retinoblastoma and how to spot it in a child.

Funding isn’t for Ethan, it’s for the charity, and without it no further research can take place. Which is why we need as much money as we can raise to go to such a fantastic charity that really don’t get the credit and recognition they deserve.

You can sponsor Amy and her dad in their 5k bounce run via their JustGiving page.

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