I first met Jessica in 2007 while conducting a physical therapy training. Her smile captured my heart. When I returned a year later, her smile was gone, as was her ability to walk. Jessica has Rett’s Syndrome. Seeing such a drastic change is difficult, but I wondered how much more difficult it is for her family. I recently discovered how this dramatic change, watching their child go from a little girl who was walking, talking and interacting with them to one that cannot talk, sit up or do anything for herself, affects them.
Jessica is one of four children, with another on the way, of a poor, indigenous family. Because they struggle to make ends meet, having a child that cannot contribute to the family’s needs makes things even more difficult.
After a three-month absence, Jessica returned to the clinic last month, a frail form of a child with raw, open pressure sores on both hips and her bottom. Seeing such a sudden change, we immediately sent a team to see how things were going at home.
Jessica’s parents were not home when our team arrived, but they were let in the house by Jessica’s grandmother. She led them to a small, private room with a dirt floor, where they found Jessica left unattended in a plastic crate too small to keep her legs straight. They were told that she was often left there for hours, unattended and without any food or water.
Several minutes later, Jessica’s mother returned and appeared quite upset that the visitors had been allowed in the house without her permission. She told our team that Jessica was not kept in the crate, but was kept in the room with her and her husband. But Jessica’s pressure sores and our inability to straighten her legs seemed to say otherwise.
Over the last few weeks, we have heard conflicting stories. The most probable is that the father has decided they should stop feeding her; in other words, let her starve to death and focus on providing for the other children. When the mother brought her to therapy a few weeks ago, we encouraged her that we would like to help. Her child does not have to die. The mother broke down crying, saying she wanted to take care of her child but every time she tries, her husband beats her. It is hard to know what to do and to discern the truth.
Regardless of the reason, Jessica, is not receiving the care she needs. It is hard for us to see when we know we can help if only the parents would accept the help offered. We don’t know what awaits Jessica, but we do know that her life is in His hands, and we are praying we can use this to demonstrate God’s compassion for His children to her and her family.