Chronicles to Grow in Humanity #19

The following is an ongoing journal* from HBI's Dr. Roberto Tarazona, Physician Lead for the Ines Project for Medically Fragile Children.

“We stand up to grow in humanity”

I.- To see and embrace all that is human: a necessity for our continued existence.
He was a small, playful boy, a little over 4 years old, his face was burned by the Sierra sun, and from his lips flowed huaynos - songs that his parents taught him. He was the first child for a couple of young migrants who left Ayacucho (The "Corner of the dead" in Quechua) with the illusion of finding a better life in the great city of Lima, especially for “Carlitos”. Now 10 years old, Carlitos is enrolled in HBI’s Ines Project for medically fragile children.

The family settled in one of the poorest areas of southern Lima. Like all the poor migrants who invade the peri-urban foothills, without any services like water nor light, they sowed into the arid soil the seeds of the new life they wanted to grow and unfold. They recently welcomed their fourth child. A beautiful baby who continues to fill Carlitos’ precarious house with joy, hope, and life. Everyone is very happy, including Carlitos. The life of a baby infects all of us with more life, and a newborn possesses the promise of a new and better world.

Carlitos stopped walking, laughing, and singing. In such an abrupt manner, as when a bird’s wings are clipped, or worse, when it is enclosed in a small cage. He suffers from one of the 7,000 rare or orphan type diseases that exist and affect at least 8% of the world's population. In Perú, there is no official registry of patients with rare conditions, since they require the latest technological instruments and a large number of specialists that the Department of Health (MINSA) still does not have to diagnose them.

According to official MINSA estimates, it is believed that at least 2.5 million Peruvians suffer from one of these diseases. They live realities intertwined with poverty, social exclusion, ignorance, and little appreciation and fulfillment of human rights, especially the right to health. Perú is a multicultural and multilingual country, with high internal migration, which configures new cultural realities yet to be studied.

Many of the rare diseases, like the one suffered by Carlitos, are simply not accounted for by the health system, they are "lost cases where nothing can be done." Parents, family, and even the community see these diseases as the product of "harm" or "witchcraft." In more dramatic situations, many like Carlitos are abandoned by their own family waiting for them to die. Under the Ines Project we find them in very poor places - malnourished, skin and bones, rigid, and with a gaze that questions our humanity.

II.- Get up to play!
"Panchito" is 4 years old and the third brother of Carlitos. In full view of HBI Perú staff, he interrupts Fany's (HBI's Nurse Care Coordinator) evaluation and says with great courage: When will you stand up Carlitos? Now with our new little brother we could play soccer. Let's get up! Carlitos listens and smiles. His eyes awaken with joy, we would also like them to awaken with hope and a new life.

Today we meet with all the Health Ambassadors to continue monitoring the lives of each of these children who make up the great family of the Ines Project. We are present to our limitations. But more than our limitations, we are alive with the real possibilities that exist within the Ines Project. We are alive with the promise to help families stand with dignity, with hope, with justice - as men and women who share their lives with modesty and generosity. We are alive with the passion to utilize the Ines Project to help people stand as true pillars of a new humanity - one where human life is respected and protected.

*translated from Spanish