“It’s medicine for the soul.”

To date, the association itself was in charge of paying for activities for its boys and girls, which they organized on four occasions, the last time at Carnival. They have now secured the commitment of the Department of Senior Citizens, Family and Social Services to hold a council on one Saturday a month that will guarantee the “right to leisure” of boys and girls with rare diseases and other pathologies that cause dependency. “Just like there’s ‘what an afternoon’ and ‘what a weekend,’ there has to be something very specific for these kids,” de la Viuda explains.

The evening begins with the traditional parachute game, which involves spreading out a huge sheet and shaking it so that children can pass under it. A hobby that requires a lot of attention, because at any time they will be called upon to change positions. “Those who have earrings go forward,” one of the monitors encourages, and some take the opportunity to cheat: “You don’t have earrings,” they shout when a child passes by. Who passes by and runs laughing under his clothes, without piercing his ears…

“Now it’s the turn of the people in wheelchairs,” a cheerleader announces, while other classmates help turn the younger children around to complete the game. Unai, a 10-year-old boy with cerebral palsy, is pushed by his 15-year-old sister Lear, who congratulates him: “You did very well, Unai.” A Real Madrid pendant hangs from his chair, symbolizing his passion for the white team. “He likes football and MasterChef,” confirms his mother, Christina Quintana, who is waiting for an adjacent room with the rest of the parents who cannot be present during the activities.

There he talks about life with the people who best understand the challenges of everyday life. “Sometimes they help with the work that the family does not do,” confesses Christina, who raises her son alone and for whom the support of the association and the families that create it are “everything”: “When it comes in front of you, you are lost and you don’t know where to turn (…) It’s wonderful because they extend their hand towards you,” he thanked.

The sessions also represent an opportunity for caregivers to “be together” and not isolate themselves. “We’re trying to fit into a puzzle,” explains Yolanda, who in addition to chairing the association, is “first and foremost” the mother of 16-year-old teenager Miriam, who suffers from type 2 pontocerebellar hypoplasia. A neurodegenerative disease that only 81 people in the world have. Mary is the only one who moves and understands.

Christina admits, “She is happy, she has had a great time (…) I say it’s medicine, for the soul and the heart, it does more than therapy.” He knows it well because he communicates with his son through a monitor that the little one controls with the movement of his eyes: “When he comes out he says to me: It was fantastic, it was very Is good.”

Your case is not classified as a rare disease, but as a disease that is much more common than desirable. Christina explains that medical negligence during delivery resulted in cerebral palsy, which limited her motor skills. “He has a good mind, he enjoys all the sports here and participates in them,” explains his mother, who despite the difficulties boasts a “happy” child who listens to Shakira, Sebastian Travel and maths. Enjoys learning: “And if he doesn’t learn square roots, I’ll assume he’ll be able to tell me I love you and what hurts him.”

Play is another need that they have, like any child, but that is often ignored by focusing solely on care: “Our children demand project,” says the association. When they play handkerchiefs, pirates or hoops, in addition to having a good time, they work on psychomotor skills and independence: “Learning happens through play.”

one Saturday a month

Due to the individual needs associated with these types of disabling deformities, it is necessary to have at least “a ratio of one monitor per child, a maximum of two”, explains de la Viuda. This first meeting was attended by five teachers from La Granja Escuela Las Cortes de Blas, as well as 20 volunteers from the association, who entertained about twenty children in the afternoon. “We were supposed to be 25 people, but six kids got sick at the last minute and couldn’t come. The problem with this type of disease is that they get cured and after some time you have to run to the hospital,” laments Yolanda.

The next opportunity will be in early April, at the same time and same place. The association wanted to highlight the “goodwill” of the department led by Rodrigo Nieto and hoped that the distance between calls marked on the calendar of a project that is currently in the pilot phase could be reduced. “This should be done at least twice a month, as children demand leisure every day.” After all, kids with rare diseases are just kids.