a young couple’s struggle with retinoblastoma, a rare type of cancer affecting their baby

Use the social network Tiktok to spread awareness about retinoblastoma. Guy and Morgane, a young couple from Saint-Avold (Moselle), are 26 and 24 years old. Last year they discovered their son Ilan, now 16 months old, had one extremely rare cancer that only affects children : Retinoblastoma, i.e. retinal cancer. The couple are lifting the veil on the illness and via their Tiktok account (@ayato_samaa). In just a few weeks, 20,000 subscribers will be reached.

Six months of chemotherapy

It all started with a game between Guy and his baby… Ilan was 7.5 months old at the time: “I hid one eye after the other. When I covered his left eye, no particular reaction. But when I covered his right eye, the good seeing one, he had a strange reaction, he was fighting“The parents understand that something abnormal is happening. After examinations in Metz, then in Strasbourg, the verdict is: retinal cancer.”We expected everything but that. We were really shocked‘ Morgan recalls. This cancer affects only 50 to 60 children a year in France. “We were referred to the Institut Curie in Paris, the largest center in Europe for this disease. We never imagined going there‘ Guy adds.

Ilan then begins months of chemotherapy as well as laser beams to eradicate the tumors affecting the retinas of both of his eyes. The right eye is preserved in remission. but the left eye is unfortunately too badly affected: it was removed. Ilan will soon benefit from a prosthesis that will make his disability much less visible. He is considered cured if no tumor appears in his eye by the age of 5. But Guy remains suspicious: “I was in contact with a person who had retinoblastoma when he was 4 years old and had a recurrence when he was 30“.

Ilan will be able to lead a normal lifebut his mother Morgane realizes: “Especially strange looks, harassment… Children can laugh mischievously. I hope it will go well, but I’m a little afraid of it.“The young woman had to give up her job to take care of her baby. Help is slow to come: the couple have applied to the MDPH (home for the disabled), but the application will not be processed before July.

As an adult, Ilan 50% risk of passing his disease on to his children : There is a hereditary component in the development of retinoblastoma.

20,000 followers on Tiktok

The couple can still rely on them Support for Internet users on the Tiktok social network. It was the father who had this idea to witness his struggle and above all to make known this rare disease. “I had searched, also in other languages, but no one talked about this cancer on Tiktok. So I started. When it happened to us, we were 23 and 25, we had many questions but few answers. I wanted to help other parents or young people living with a prosthesis‘ explains Guy.

In just under a month, the @ayato_samaa a million total views, and is followed by nearly 20,000 people. “The enthusiasm was impressive. We have many questions about the condition, parents or young people affected by retinoblastoma. All with great kindness“.

  • To learn more about retinoblastoma, there is an association: Retinostop.

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