Manifesto “Caring for the lives of gravely ill children, a ‘Victoria’ for all”
In the act of starting the development of the Pabellón de la Victoria, the voices of two siblings of children with grave illnesses were heard as they read out a manifesto. Hugo is the brother of Valentina, a young girl who died within a year of a congenital disease. Petra is the sister of Bruno, a young boy undergoing treatment in the Pediatric Palliative Care unit in Sant Pau.
Those of us children who grew up in Cataluña had the immense privilege of having incredible hospitals, who helped and cured us when sick. Medics, nurses, and other medical personnel have jobs that are full of hardship but are vitally important. We also have researchers who study hard to find medicine that can cure diseases.
But we also have children with illnesses that cannot be cured. Each year there are more than 3,000 of these children in Cataluña. They have grave illnesses and can stay ill for a long time. Sometimes, the illness starts suddenly and ends just as fast. Other times, these children will live with the illness for many years.
Us siblings and parents know this hardship well. To have a child or sibling that cannot be cured is difficult, but the worst of all is feeling alone in these moments.
In the hospital, they care for the children with grave illnesses very well, but oftentimes they have fever, need to be operated on, or they feel very bad. The rest of the days are spent at home and it is necessary to care for them all day and night, for months or years. This results in parents being tired, having trouble working or maintaining a normal family life. They are scared and sad and cannot show up for their other children. Us siblings feel alone.
The grave illness is the principal problem of a family, the most important, but not the only one. We have other problems, the ones that the rest of the world has, and so we need more help.
We know that no one likes to talk about illness and death, especially when it concerns children. But we must talk about it, because it is part of life. If we hide it, you hide us, and you leave us all alone.
We also want help from our schools and our teachers. No one is sufficiently prepared when a student is very sick or has died, any one of us can end up in that situation. We believe it to be an important lesson.
Every child has dreams, including the most sick, and for us it would be a dream for our siblings and family to live happily, together, and make good memories.
We ask that you help us make this new center to care for us a reality, to help us and accompany us in these most difficult moments, and to keep helping us during grief.
We dream and desire for the Pabellon de la Victoria to soon be a reality and that every child and family that needs help can receive it, and have a happy life.
We would like to very much thank the people who are already helping this be possible and ask for all of society to help us finish its construction.
► You can help support the project at www.unavictoriadetodos.com