February 15, 2025, 7:23 am | Read time: 7 minutes
On March 6, 2022, Anny Gertz looks into her newborn son Arian’s eyes for the first time and instinctively feels something is wrong. But her worries are initially dismissed. Weeks later, the devastating diagnosis follows: Arian has eye cancer.
Eye cancer–also known by the medical name “retinoblastoma”–is a rare disease of the retina. It occurs almost exclusively in childhood and can affect one or both eyes. Arian also had the malignant tumor in both eyes. FITBOOK author Julia Freiberger spoke with Arian’s mother, Anny Gertz, and tells the moving story of the little fighter who faces cancer with incredible strength–and inspires other affected families.
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Overview
What is Eye Cancer?
A retinoblastoma is a cancer of the retina–the area at the back of the eye that receives and processes light. The disease can affect either one eye or both. In about 60 percent of cases, only one eye is affected, which is then referred to as unilateral retinoblastoma. If the tumor is present in both eyes (which occurs in about 40 percent of affected children), it is called bilateral retinoblastoma.
The insidious nature of these tumors is that they grow particularly quickly and can appear in a single spot in the eye or in multiple locations. There is also a risk that the cancer will spread within the eyeball and along the optic nerve into the central nervous system.1
Frequency of Eye Cancer
Although retinoblastoma is considered a rare tumor disease in Germany, it is the most common eye tumor in childhood. With around 60 new diagnoses per year, the disease statistically occurs in about one in 18,000 to 20,000 children. Boys and girls are equally affected. Approximately 80 percent of the affected children are younger than four years old.2 Often, the diagnosis is made in the first year of life–as was the case with Arian.
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Support for Little Arian
The diagnosis of eye cancer was a shock for Arian’s family, as BILD reported. But instead of wrapping him in cotton wool, his mother decided to give him as normal a life as possible.
Each year, around 120,000 children worldwide are diagnosed with eye cancer. In Germany, the Children’s Eye Cancer Foundation (KAKS) advocates for comprehensive eye screening to be included in routine check-ups.3 Early diagnosis is crucial to initiate life-saving treatments in time and to provide affected children with a better prognosis. The foundation is supported by the BILD charity Ein Herz für Kinder, which is committed to both affected families and raising awareness about retinoblastomas.
Little Cuddly Helper
Arian and his family also found support from KAKS. A special gift from the foundation became a valuable companion for him: the little elephant Elli, a stuffed animal with a removable eye. It helped Arian understand in a playful way that his fate is not unusual.
Today, Arian is a happy, brave boy who openly deals with his illness–and with Elli by his side. In the interview, his mother shares how she explains the illness to him, how Arian copes with it, and what message she wants to convey to other parents.
FITBOOK Interview with Arian’s Mother
FITBOOK: How do you explain to a small child that they are sick?
Anny Gertz: “Arian is still too young to understand that he has cancer. But his sister experienced everything consciously, and it was always important for us to talk about it openly and honestly. We explain what cancer is, what can happen, and why Arian has to go to the hospital so often. We have also been transparent about major decisions, like the removal of his eye. I document everything precisely–if Arian has questions later, I can show him reports, read everything to him, and explain. There are no secrets for us, only open communication.”
A Normal Life Despite Eye Cancer
How does Arian cope with his illness? Does he understand what is happening to him?
“He is doing very well, he has no limitations. We don’t treat him any differently than other children–he is allowed to run, climb, play soccer. It would be worse to wrap him in cotton wool and make him insecure. By now, he understands that he has a glass eye. If you ask him, he points to it or says, ‘I only have one eye.’ He probably doesn’t grasp the deeper background yet, but he grows up with it as if it were the most normal thing in the world.”
Was there a moment when you thought: He is stronger than I could have ever imagined?
“Arian is a miracle to us. Since his birth, he has been in contact with doctors and hospitals, which is often uncomfortable even for us adults. But he approaches it with incredible strength and joy. He looks forward to seeing the doctors, the nurses, the examinations because everyone treats him so lovingly. He confidently says, ‘I go to the hospital because they help me there.’ He senses that the check-ups are important so he can lead a completely normal life. This fearlessness and openness touch us deeply.”
“His Courage and Smile Give Us Strength.”
Was there a particular situation where Arian moved you emotionally?
“He impresses us time and again with his positive nature. Despite everything he has been through, he approaches others openly and warmly. He sees the good in everything–it’s incredibly moving. His smile, his courage, his trust in life give us strength.”
How is Arian doing today?
“Very well! He is a happy, active boy. We do everything to ensure he doesn’t feel different from other children. He grows up completely normal, without special restrictions or fears.”
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“He Sees a Kindred Spirit in Elli.”
What did Arian think when he first learned about the elephant?
“When he was ten weeks old, he didn’t consciously perceive it yet. But later, when we showed him that you can remove Elli the elephant’s eye–just like his–he was fascinated. Elli is always by his side, and when he plays with her, the eye has to be out. I believe he sees a kindred spirit in Elli. The stuffed animal is a wonderful way to encourage him and other children with a similar fate.”
How Affected Families Find New Strength
What message would you like to convey to other parents who have just received a similar diagnosis for their child?
“When you receive this diagnosis, you plunge into another world. The familiar normality seems to disappear, and everything seems dark and hopeless. But you are not alone. The solidarity with other affected families, like in the Children’s Eye Cancer Foundation, gives incredible strength. It’s important to deal with the situation openly–there is nothing to be ashamed of. Grief, anger, frustration–all of that is allowed. But this new world you enter can still be beautiful. You begin to see life from a different perspective, becoming more grateful for every moment. It’s hard, yes, but there is light at the end of the tunnel.”