We believe in the power of slow and steady. We believe in empowering communities to create their own futures. This takes time. We are thankful for the many years we have with the people we serve.
We started the Ines Project with the belief that helping families living in deep experiences of poverty and living with children with disabilities connect to the knowledge and skills of health systems navigation and self-advocacy, leads to better health outcomes. A simple idea – but very complex to implement.
When Maria (not her real name) was 13 years old, she nearly died. Maria was born with Cerebral Palsy (CP). For most of her childhood, her CP was complicated by poor health services coordination. Maria and her family lived in a rented wood shack in one of the poorest areas of the sprawling shantytown of Nuevo Pachacutec on the outskirts of Lima.
Maria has come a long way since our team first met her. That first day was one of the hardest we have ever had. You see Maria not only has CP, she also had tuberculosis (TB). TB is treatable. However, at the time we met Maria, she was not receiving any treatment . . . for her TB or her CP. She was literally dying. She had not eaten for over a week. She was not lucid, had a very high fever, and a fractured spine from an aggressive form of TB that infects the bone. She was dying . . . at 13 years old.
Perhaps the worst part, her Mother had given up. Her mother stop feeding Maria. She was no longer drinking, and had not gone to the bathroom for three days. Our team pleaded with the mother not to give up. To take Maria to the hospital. We told her we would accompany them and stay throughout the process – and beyond. We talked with Maria’s mother for hours. She could not be turned.
She was tired of the doctors yelling at her for not caring for her daughter. She was tired of people’s pity. She was anger with the mistreatment she received from the nurses and doctors, and the lack of empathy they expressed for her daughter and her family. She was tired of having to beg her daughter to eat, tired of carrying her to the bus stop, to be turned away by the driver because – “we don’t take people like her.” She could not afford the taxi fare to the hospital. Maria’s mother told us "our lives will be much better, if she [Maria] just “went away.”
That day, the whole team broke down in tears. After countless hours of something shifted. We were able to convince her to meet our nurse, Fanny, the next day at the hospital. This began an amazing recovery not just for Maria, but the whole family. With Fanny’s tender touch, and the compassionate of our Ines Project team. We walked beside the family to guide them through that rough day at the hospital. We helped Maria re-enroll in a state sponsored TB treatment program, and give hope to a mother that had no more.
It’s been over 6 years since we first met Maria. She and her family are no longer enrolled in the Ines Project. Maria is now a happy young adult. The family stills lives in deep poverty and Maria has ongoing healthcare needs - but now they have the knowledge and skills to navigate their own future. We check-in on Maria and her family regularly. She recognizes Fanny and squeals with joy when she sees her. The family is whole again - because we showed up, because we walked beside them.
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.