It can be really challenging to keep the focus when the outcomes aren't always so clear. It can be even more challenging when the outcomes aren't good.
The children enrolled in our Ines Project come from very difficult circumstances. They are often living with a profound disability and in a deep experience of poverty. In many of these situations - there is no simple solution.
This week the team met with the mother of one such child. Marcus, not his real name, was "normal" for the first couple years of his life. Then, at some point things changed dramatically. Marcus went from smiling and playing - to living almost entirely in bed. His condition deteriorated so quickly that every doctor he saw was confounded to explain his diagnosis. When we got involved, the family had given up any hope of figuring out what was going on with their child.
Through careful guidance from our physician lead on the project, Dr. Townsend Cooper, and a team of specialist consultants - it was determined that Marcus was suffering from a rare genetic condition. To help name the diagnosis - blood samples were sent to laboratories in the U.S., Canada, and Argentina. However, the laboratories came back without a conclusive diagnosis - and, for the past few years, the team settled into a plan to support Marcus without fully knowing the specifics of his diagnosis.
Unfortunately, Marcus has continued to deteriorate. His mother, his sole caregiver, father, 2 siblings live in a one room house the family rents from a relative. Marcus' mother spends all day caring for him and doing everything she can to carve out some "normalcy" in their lives. They live in deep poverty.
A couple of weeks ago, a doctor in Perú recommended further testing for Marcus. The tests would require that blood samples be sent to the United States. Desperate to know what is going on with her son, and grasping for any hope, the mother requested the Ines Project pay for the test. There is no assurance the information gleaned from the tests will have any bearing on Marcus' care. In fact, the tests are a real long shot; and, even if the test can fully define the genetic diagnosis - there are no evidence based treatments for the types of conditions affecting Marcus.
So, the team met with the family this week. They talked about the options. They discussed possible outcomes. They listened to the family's needs. They asked Marcus' mother how she wanted to proceed. It was not an easy conversation. Everyone in the room cried. In the end, it was determined the best course of action was to use whatever money would be spent on testing to continue to provide palliative care for Marcus.
It is very humbling to work with families like Marcus. There is no easy fix or simple solution. Sometimes the most important thing we can offer is our love. We are forever thankful to be in service to children like Marcus and his family.
The HBI Blog is a rotating journal from our staff. Our Blog is a series of messages from the field, insights from our work, and lessons in service.