Testimony of Fabiana Maria Leonel da Silva, 44 years old
My son was born with a rare syndrome called Noonan Syndrome, which affects the whole body: it causes difficulty walking and seeing, as well as severe heart problems. The doctor told me and his father, still in the maternity ward, that he would not survive. And that if by some miracle he did not die, that he would spend the rest of his life lying on a bed. It was a shock; no mother is prepared for it. But my son is alive. Dara’s team helped me understand that my son was perfect. I learned to be a better mother, a better friend, and a better human being.
Arrival at Dara
I arrived at Dara in 2018 and – I swear – I thought they had referred me to another hospital, since at that time Filipe went from hospital to hospital all the time. He had some bouts of arrhythmia; he would pass out and turn blue. We would take him straight to the Emergency Unit near our home in Rocinha, in the South of Rio, for him to recover consciousness, then we would head by ambulance to a hospital. It was always like that. This time, though, he was hospitalized at the Laranjeiras Hospital, when the doctor told us to go to Dara.
Today, we know that the reason for it was that we were going through serious financial problems. Filipe’s father and I are capoeira teachers, and we worked in a social project in São Conrado. All of a sudden, the project ended, and we were both left with no income, living rent-free and not being able to buy the many medicines Filipe had to take.
When I got at Dara, they gave me the strength to dream again, because the situation was very difficult. I’ll never be able to give back enough. I remember that day: I was coming from another hospital, and I hadn’t even had breakfast. Filipe was hungry. They immediately gave us a snack and explained how it all worked. We accepted everything. It all came from God.
The first steps
In the first few months, we were given milk and diapers for Filipe and a card to buy food, which made the situation at home much easier. But most of our money went on medicines. We spent almost R$ 2,000 a month on medicines, and at that time we had zero income. We got all the medicines we needed from donations at Data. In addition, we were advised on how we could receive governmental aid, and it was an extra monthly income.
The ophthalmological task force
In 2021, there was an ophthalmological task force at Instituto Dara called ‘Ver & Viver’ (See & Live) and one of Filipe’s biggest difficulties for a normal life was not being able to see properly. Because of the syndrome, he had severe strabismus and couldn’t walk without falling or bumping into things. He also couldn’t read the small print, even though he had been able to read since he was 1 year old, and we had to read almost everything to him. Watching TV, just up close. And the vision problem still caused severe headaches. During the task force, he was examined by ophthalmologists and referred to a strabismus specialist– a strabologist–from the Pedro Ernesto hospital.
There, the doctor said that his case was surgical, but that the surgery could be life-threatening. In view of this, he preferred recommending eye exercises to mitigate the effects of the syndrome and – most importantly – prescribed corrective glasses. Since we wouldn’t have the money for that either, a partner eyewear company, which also participated in the task force, gave him a pair of glasses. The change was striking.
A change in perspective
He started to read and write more, stopped falling, and can now walk for much longer. “Mom, I have beautiful eyes!” he told me. Filipe is an artist, I’m so proud of him. He’s a rapper – he’s already won first prize in a rhyme battle! – and has even written a book, published by his school. He also loves to dance, and I think the inspiration for that came from his parents, both capoeira teachers.
We talk a lot about material things, help with diapers, medicines, food, but the most precious thing I will take away from Instituto Dara is the talks we had in the conversation circles of the ‘Aconchego’ project.
That changed my relationship with Filipe.
When you have a child with specific needs, you might ask yourself why that is exactly. I used to ask that myself that question. Over time, I learned more and more by listening to the lectures and the word of the psychologists. This dialogue made our relationship and our love for each other grow.
Change in different areas
Also, my health was positively affected! Even though I was an athlete, I taught capoeira, I didn’t eat properly and, therefore, I had very high blood pressure. I thought it was because I didn’t have money to buy quality food, that what I had was only enough for canned goods, sausages, instant noodles, food made in oil or butter. It wasn’t true. I didn’t know how to eat properly. Dara’s nutritionists taught me how to eat better, and that improved the whole family’s diet. I learned to eat fruit, vegetables, greens and salads, and canned, processed food and sausages no longer made their way to our home.
Today, Filipe’s father and I go back to work, thanks be to God, and I pass on everything I’ve learned to my students and their parents whenever possible. We just want to pass on the lessons we learned, you know.
