Walking Alongside - Wayne Centrone

The street outside of Liliah's home.

I'm just back from another trip to Perú. The trip involved meetings and work on a number of projects. One of our partners on the Anemia Project made a trip across the Atlantic to learn more about the work of HBI. Entia, a London based medical device manufacturer, joined us for a week of meetings, trainings and site visits.

After an intense few days of trainings and project meetings in Arequipa under the watchful guidance of Karen Falkenstein (HBI's Director of Nursing and Evaluation), the Entia team flew to Lima to meet with myself and additional HBI staff.

We met and discussed the work of HBI and Entia. We talked about our organizational missions and the histories of our development. Then we visited some of the families enrolled in the Ines Project.

Liliah (not her real name) and her four children live in a home owned by her estranged husband's family. Liliah's husband left her and her four children a couple of years ago, when it became apparent two of their children were suffering from significant developmental and genetic challenges. Liliah lives in a small partially dirt floor room, sectioned off with heavy blankets hug from the wooden ceiling. She has no running water or sewage. And, with only limited access to electricity, no more than a couple of hours a day, life is a constant struggle.

Two of her children are enrolled in the Ines Project. Both suffer from what appear to be inherited metabolic disorders. Despite numerous tests and visits with some of the top specialists in the country, no diagnoses have been established. All the while, Liliah struggles every day to find a few hours of work to provide a meager amount of money to keep her family together.

Liliah and her children have been enrolled in the Ines Project for a few months. Over that time, the team has worked hard to help Liliah gain access to specialists, arrange day care services, coordinate transportation to appointments, and support her in learning to advocate for the longterm needs of her special needs children. 

This is not easy work. It requires a continuous commitment to showing up. The team makes weekly visits. Fanny and Gabby, the two nurse care coordinators on the Ines Project, often meet Liliah at medical appointments. Through partnerships with other non-governmental organizations and the Anglican Church of Perú, we've been able to connect Liliah with volunteers to help with childcare, provide modest financial support and offer mentoring and tutoring. As Liliah has gained more and more trust in the Ines Project team, she has invited us to become a part of her life. She has invited us to walk alongside her in her journey. 

​When we got back to the HBI office after our visit with Liliah, I asked our partners from Entia what they thought about the experience. Millie Clive-Smith, Chief Operations Officer and co-founder of Entia, said the experience gave her a concrete understanding of the work of HBI. She said visiting with Liliah and her children offered her a direct way to "see how building bridges of support, collaboration and compassion empowers people to change their own lives." 

Our work, from helping partners structure training and service delivery models to advocating with families living with children experiencing disabilities, is about empowering people and communities to be their own change agents. It's work fully grounded in humility and compassion. And, perhaps most importantly - it means we must walk alongside one another in this great journey.

We're just getting started. 

Thank you for your continued support. 

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