What beautifies the desert
is that it hides a well anywhere
Antoine de Saint-Exupéry, ‘The Little Prince’
-When was born Àlex, in 1982, we had trouble assimilating it. Above all, to me. We are looking for a pediatrician who would give us hope, to tell us what we wanted to hear. One of them told us: ‘What Àlex has is not Down's Syndrome, is mosaicism. It has a syndromy, but not trisomy 21 ’. Words … One clings to a burning nail. Problems are problems until you assume them. Then they become circumstances of your life. Let's see: who has no circumstances?
Alex Masfurroll spent three years in this world. He had accompanied us in the early eighties, a still dark time, at least in the care of these pathologies.
Today, Àlex Masfurroll would be 37 years old.
Some, seeing me with the baby in the cart, changed sidewalk: in the eighties, a child like Alex was a Mongolian or a subnormal ”
Gabriel Masfurroll He tells me that some, seeing him come with the baby in the cart, changed their sidewalk:
"I guess they wouldn't know what to tell me." So, there was no talk of Down syndrome. A boy like Alex was a Mongolian or a subnormal. And they said it with contempt.
– Were they friends, acquaintances …?
-How would Josep Pla, there is acquaintances and there are greeted . These were greeted . Do you know what happened when Alex died?
-Some greeted They told us: ‘Luckily’. 'Lucky'. 'What a relief'. But hey, no! That our son had died, and it was exactly like any other!
–And how did your family live it?
– We distribute the papers. Cris, my wife, he turned. Is a nurse. He changed his habits. He focused on the early stimulation of Àlex. Our son Gaby, three years older than Alex, he suffered especially. When Alex died, after pneumonia and fulminant cardiac arrest (it was an unexpected process, not common), we were called from Gaby's school. We were told that the boy played burials. Too Paola, the little sister, takes him with her.
I don't remember anything that happened in the two years after Alex's death; our son was gone and there was no talk about him at home ”
–I intervened in the Catalan Down Syndrome Foundation. I got involved in the reform of the LISMI, the Law of Social Integration of the Handicapped. But you know what?
"I don't remember anything that happened in the two years after Alex's death." I have a nebula from that. Our son was gone, and there was no talk about him at home.
-In any moment?
–Now I have no problem telling it. But for eight or ten years, Alex's figure belonged to something very intimate. We did not watch your videos. His presence was enclosed in four walls.
– Everything changed when we created the foundation, in 2006. It occurred to us to call it Fundació Àlex. And for that, we had to make Alex's story known. We didn't want to watch your videos, but we dug them up. And that changed everything. Alex came back to life. The grandchildren, I have three, talk about Uncle Alex. And now he is everywhere.
–Alex was born, were you aware?
– At a statistical level, there was 0.00001% of what happened to us. We had no background. My wife was 26 years old and I, 29. You have to believe in destiny. His birth brought hard and other good things. We would not have the foundation. We would not help others. If we all put granites, the beach will be beautiful.
On Thursday, Àlex occupied the center of a large room at the Arts hotel, the setting for the first Charity Gala of the Àlex Foundationunder the motto Perfectly Imperfect, under the auspices of the Marriott Business Council.
Gabriel Masfurroll seems today a Renaissance man. In his office he keeps a guitar by Paco de Lucía. He presides over the board of directors of the Mi Tres Torres Clinic. President of the social council of the UAB. He was director of Barça for fifteen years: He had weight charges in the days of Núñez, Gaspart and Rosell. He graduated in Economics.
At a statistical level, there was 0.00001% of Àlex coming with Down syndrome; you have to believe in destiny ”
Publish biweekly columns in Brand . The section is titled
Letters to Àlex.
A last paragraph in Catalan is allowed.
The last paragraph in Catalan, in Brand ! And always close the columns with a phrase:
He also makes books.
The audacity to live
(Caligrama, from Penguin Random House).
-What is it about?
– It is my autobiography, from the age of 65. It seems that, when you reach that age, you have crossed a line and are taken to scrapping. You must reposition yourself and consider the future. The book has made me reflect on my life. Now I allow myself to leave things that I no longer have to do and focus on others.
Let me go back to Alex:
–The Alex Foundation, what do you do?
– A month ago a child from northern Argentina came to Spain. He had cancer and leg malformations. We managed to avoid leg amputation. The child will live a normal life and has met Messi. We help children with Down syndrome and others with physical disabilities. We make sport a social integrator. They practice sailing, swimming, athletics, field hockey or boccia, a kind of adapted petanque.