At the age of sixteen and after completing the mandatory schooling, a Portuguese boy named Marco faced the biggest challenge of his troubled life. A carrier of Cornelia de Lange, Marco could not find a school that would accept him. The educational system offered him no solution to pursue his studies or become integrated into society. He then turned to his mother and said, “It is easy, Mum! Can you do a school for me?”
Marco did not live long enough to see his dream come true. But his mother, Paula Brito e Costa, pursued it for him. Last July 1st, in the presence of the Portuguese Health Minister, Ana Jorge , and the Portuguese First Lady, Maria Cavaco Silva, construction began on the Casa dos Marcos. “Although Marco cannot share this joy, I am convinced that all of the other Marcos will find in this place the answers they long for and the care they really seek,” said Paula Brito e Costa in a recent interview on Educare.pt.
A project by Rarissimas, the Portuguese National Association for Mental and Rare Afflictions, the Casa dos Marcos is located in Moita, near Lisbon. It is has been conceived as a space where people affected by a rare disease can develop the skills that will allow them to integrate into society and live lives that are as normal possible.
The Casa dos Marcos will also serve as a residence for those that require intensive care. “The Casa dos Marcos was imagined by a rare boy to fulfill all of the unmet needs of those thousands of parents, who, like myself, didn’t receive social or pedagogic support for their special children,” said Paula Brito e Costa in her speech at the commencement of construction.
The construction of the Casa dos Marcos is expected to be concluded in July 2011.
Interview (in Portuguese) with Paula Brito e Costa here
Short documentary (in Portuguese) about Casa dos Marcos here
Foto: Marco, the mascot of the Casa dos Marcos. © Rarissimas. Used with permission. All rights reserved.