When a child is diagnosed with a life-threatening illness, their world, and that of the entire family, is affected in every way. The situation is much more difficult when families live in rural areas, since there are not always specialized hospitals nearby that can treat them. For this reason, they are usually forced to travel to Lima, the capital city, for medical treatment.
This is often a great challenge for the family, since they must separate indefinitely, right at a time when they really need to be together. It also involves large economic expense.
When doctors determine that the child has a non-curable disease and recommend that they return home to spend their remaining time, very often the family does not have the minimum resources or cannot supply the necessary comforts to give the child the care he deserves and needs.
“For 6 years I managed the Ronald McDonald House in Peru, whose mission is to house families who must stay away from their homes while their children receive medical treatment for some complex and life-threatening diseases.
I wished that each child who came to the house would be cured of his illness, and be able to return home with his family, but it was not like that. There were beloved children who died, generating in me frustration and a feeling of injustice. It was hard for me to understand and accept it.
We had many cases in which the doctors said “There is nothing else to do, so take the child home and give them the best quality of life possible”. What kind of quality of life can a poor family give to their children who are dying?
One of the things that affected me the most was when the parents asked us if we could let their children stay in the house during their final stage, because they did not have the resources to provide them with well-being at home. These parents were accepting the death of the child, but what they could not accept was to see them suffer.
When a doctor says that “there is nothing else to do”, it is not exactly true. They may not be able to cure the disease, but there is always a lot to do. The first thing is to make sure there is no pain or problematic symptoms. Then, emotional, social, and spiritual support can then be given to the child and their family. They can also be helped to say goodbye, and make last wishes. All of this is what is called Palliative Care.
Four years ago, I left Lima and moved to the Sacred Valley. It was a difficult decision, but I did it with the promise that one day I would build a hospice so that every child has a beautiful and dignified place to spend their final stage of life. At the time, it was only my dream, but I decided to start studying and prepare for this mission. At the same time, donors arrived who were willing to make this project a reality.
In 2021 we registered Casa Khuyana as an official non-profit association, we bought the land and started the procedures and licenses to be able to build. In July 2022 we finally started the construction of the hospice. Construction is estimated to take 15 months. After that, we will begin to equip the facility.
For me, it is an honor to lead this project, and I am confident that we will find the support we need to finish this work that will impact the lives of many families.”