Rai’s Glow Story

Chẩn đoán: U nguyên bào võng mạc

When Rai was born, everything seemed to be perfect and we never imagined that his life, nor ours, would head towards an unknown journey when at 4 months a strange light appeared in Rai’s eyes.

Our son is a lucky child, since thanks to the dim light of an elevator and later the confirmation in some photos, we were able to detect in time that something in his eyes was not right.

Approximately at 3 months we had detected that it was easy to lose yourself in Rai’s gaze, when there was little light, it was like looking into the abyss, he lacked expression and we didn’t know if he also lacked visibility.

In one of the check-ups with her pediatrician (a week before she had had conjunctivitis), and somewhat concerned about the issue of the abyss, when they sent us home with a favorable global diagnosis, Marta showed the pediatrician some photographs taken with flash where a little eye of Rai appeared with a white spot. Without giving us any further explanations, we were referred to the ophthalmological emergency department of the Sant Pau hospital in Barcelona. There a group of ophthalmologists observed our son giving us as a diagnosis “a little white mountain” in the fundus and possible retinal detachment. In order to broaden the diagnosis, they urgently referred us to the best pediatric retina specialists. They referred us to the Sant Joan de Déu Hospital.

The next day we continued looking for answers and we went to Sant Joan de Déu where Doctor Català, his team and the team of oncologists visited Rai and it was that day when we heard this word for the first time: RETINOBLASTOMA.

Rai debuted with bilateral retinal cancer at 5 months of life, which led him to undergo several sessions of systemic chemotherapy, different sessions of both thermotherapy and cryotherapy, and two sessions of intra-arterial chemotherapy.

From the first moment, both Rai and his family have had the support of all the HSJD professionals: doctors, nurses, specialists, administrators, cleaners, volunteers, pallapupas… and thanks to all of them today Rai is 6 years old and although he continues with his reviews every 3 months and he doesn’t see anything through his left eye, he is a child full of life like any other.

We like to look at the positive side of things and from this unexpected and hard journey, we are left with the beauty of having come across wonderful, totally altruistic people and with all the moments of support shared with other families who were going through the same thing as us. giving rise to the birth of our association: AENAR – Miradas Magicas.