There is no such thing as work without challenges. The more significant, demanding, and harder the work – the more the challenges. That doesn’t mean it’s time to give up or roll over with defeat. Instead, it is an opportunity to dig in and work harder.
This push and pull, give and take, up and down, is especially evident when working with families and children who have lived through the experiences of generational poverty, traumatic stress, and social isolation. The following story is about the power of resilience and one little girl’s journey to healing.
Standing in Daisy’s home was overwhelming. The stench was powerful. Dirty clothes hung from a makeshift line in the middle of the one-room hut. There was no running water, no bathroom, and no electricity. Instead – a dirt floor, a single bed, and a small table covered with discarded papers and empty medication containers.
We first met Daisy (not her real name) in 2013. Her story is about extreme poverty, family violence, and social isolation. Daisy suffers from uncontrolled epilepsy. She literally seizes every day. Her mother told us that she often seized for up to an hour. The uncontrolled and prolonged seizures left Daisy mentally altered and suffering from several complications. Daisy, as we quickly determined, was in a critical situation. She was at risk of dying with her subsequent seizure. Late in 2013, we arranged a comprehensive care coordination plan for Daisy. Unfortunately, after a few weeks of care coordination – we lost contact with Daisy and her family. It was heartbreaking.
Apparently, Daisy and her family moved. Her father got into a physical altercation with the foreman at the mine where he worked and was fired. The family moved to the small town where Daisy’s father grew up. The city, a remote mountain community, offered minimal resources. Daisy’s mother quickly left. She moved in with a new man. He did not want Daisy. Daisy ended up on the streets.
It took almost ten months to reconnect with Daisy. Trip after trip to the high mountain town continually led us to dead ends. Finally, our outreach worker (Charito) connected with Daisy’s grandparents. Finding Daisy abandoned on the streets, her grandparents took her in, and she lived in their dirt floor home. She has not been on any medications for months, and her seizure disorder was uncontrolled. At six years old, Daisy was seizing up to five times daily.
Her grandparents took her to the local health post, but the nurse in charge referred them to a larger city, two hours bus drive away. They have yet to follow up on his referrals. Fearful that the cost of having Daisy seen would be more than they could afford on their meager income as farmers – they turned to traditional healers. Now, Daisy is getting worse, and her family doesn’t know what to do.
Our plan was simple . . . and entirely complicated. We needed to link Daisy into care through the Peruvian government programs. To do this, she needed a formal transfer of care from the clinic in her hometown to the Hospital for Children in Lima. This was a challenging task. Daisy’s father and grandparents were scared. They were scared of the unknown. They were afraid of going to the big city of Lima, where their style of dress, form of Spanish, and general way of living make it pronounced that they are from the mountains – and, thereby, a lower socioeconomic class.
Our next step was firmly based on advocacy. Charito traveled back to Daisy’s home. She took the family to the health post to complete the necessary paperwork and then loaded everyone into a bus for the 2-hour trip to Caraz. In Caraz, Charito helped advocate for the family by transferring Daisy’s care to the Hospital for Children in Lima. The challenge, all the advocacy, and planning needed to happen in the next two weeks – or the original transfer of care will expire, and the process would need to start over. In addition to the logistical challenges – every day Daisy continued to seize, she was losing more and more brain function, and she was more and more vulnerable to death.
After months of advocacy and support, Daisy was finally seen by a pediatric neurologist in Lima. Her medication was dialed in, and her seizures were controlled. The family moved in with an uncle in Callao to be closer to Lima and the Children’s Hospital. We lost contact we Daisy. However, the last time we saw her and the family – she was walking, starting to talk, and receiving comprehensive care at the Children’s Hospital. She was reclaiming the life she deserved.
Daisy’s resilience taught us that we needed to be resilient. We are thankful for the life of Daisy and her resilience.