In the first months, in this devastating whirlwind, we were unable to talk about anything we had been experiencing for four months. Until Tiago started to show me the importance of talking about the subject to alert other families about early diagnosis.
We realized during this period when we were silent that many children had tumors growing in their eyes and their parents didn’t know.
If we, two journalists, who live in São Paulo and have access to the best doctors and a lot of information, only discovered it at an advanced stage, imagine who doesn’t have access to information in Brazil?
Therefore, we decided to tell her in January, four months later, while she was still undergoing her first chemo treatments, which continued for two years.
There are things that happen in your life that are not expected, but they transform your life forever. There were two paths: sinking into suffering or finding a way to see life differently, which we ended up doing later, when creating the NGO De Olho nos Olhinhos.
It is a very rare disease and the earlier the diagnosis, the greater the chance of effective treatment. I’m sure Lua will like to know how many lives she helped preserve.
When a tragedy like this happens in our lives, we begin to challenge God. Did I do something wrong? Why is my daughter being punished? This thought leads to more pain and I had to change: God sent, through our daughter, a mission to save other children.
In our hearts, all the children who have retinoblastoma in the country are our daughters too, and we will take care of them and try to save them. We carry out campaigns, help families and assist everyone who comes to us through the NGO.
We will do everything we can to help because it is not fair that my daughter has access to treatment and other children do not.
This is such a rare disease that there is no queue at the SUS. The bottleneck is early diagnosis and the ideal is for every child to see an ophthalmologist within six months of life.
We usually only take them at school age, when a learning problem is detected. Hence the importance of observing signs such as white reflection in the eyes, strabismus, gaze deviation (as if the eye were a camera looking for focus). Information saves lives and it is no exaggeration to say that.
And we continue to take care of the NGO De Olho nos Olhinhos, helping families, providing information and ocular prostheses.
