The following is a story that originally appeared in a letter that HBI sent to our donor base along with "year-end" receipts. The story is particularly timely with regard to our Bridging the Divide campaign.
A few years back HBI was working in a community providing medical and social outreach. The community, a desperately poor area of dirt streets and clay brick homes, sits on the edge of one of the largest urban slums in Latin America. An area so poor that it actually rests “outside” of a completely impoverished slum.
At the time that I met Ines she was only two-and-a-half years old, yet she had suffered more than most people will in their entire lives. She lived with her mother and sister in a small "house" in the community of Via El Salvador - actually they will tell you that they live in Via El Salvador, but they really live in a small squatter area above the formal slum. When I first met Ines, she had never walked on her own. She did not speak. She could not go anywhere without her mother.
You see, Ines has a horribly disfiguring condition that causes her skin to fall off in sheets. Her entire body, with the exception of her head was covered in blisters, scabs and open sores. The condition, a rare diagnosis known as Epidermolysis Bullosa (EB) has only four known cases in the whole country of Peru. Her diagnosis is so advanced that she even has blisters on the soles of her feet and under her little finger nails. When I first met Ines she was constantly in pain.
I met Ines on the last day of a week-long outreach campaign – just as we prepared to end our work. She is a beautiful young girl with deep chocolate brown eyes and a soft smile. After spending almost an hour with the mother and daughter, taking pictures, making copies of the medical records she brought - we said goodbye. I felt haunted by the experience, for I wondered what I could possible do. I felt a little bit hopeless for the plight of the mother and daughter. Then, almost before I packed my bags to leave, they came back. She - Ines – came back to the clinic to kiss me goodbye. It was almost too much. It was a crushing moment. A moment when I realized the importance of our work.
HBI’s initial work with Ines included helping to secure a monthly stipend for the family. Money that went to pour a concrete floor on their dirt floor home. Money that helped to pay for monthly visits with a dermatologist who we connected with the Dystrophic Epidermolysis Bullosa Research Association of America to advance her knowledge about caring for Ines. Money that went to help Ines go to school and her mother to learn a trade to advance the economic situation of the family. Finally, we realized the most important thing we could do to help Ines was to “build bridges” of support for her and her family. As such, some of the monthly stipend went to pay the salary of a care advocate. The advocate helps to link Ines to care and support. We did all of this with a monthly stipend of $150.
Since we initially started working with Ines, our program has grown to include care, advocacy and support for a number of medically fragile children. Thanks to your generous support, the “Ines Project,” working in close partnership with the Anglican Church of Peru, has grown into a collaborative effort that is assuring care and advocacy for some of the poorest children with the most advanced medical needs in Peru.
Ines and the thousands of children who suffer through extreme poverty with medically complex conditions need our help. The depth of support that is needed can not be matched with a small program like the one that we have created through HBI. The depth of support needed requires the development of many "bridges of support." Bridges built by Peruvians for Peruvians. Our hope is that the Bridging the Divide events can call greater attention to the numerous opportunities that people have to build the bridges that will assure every child has the support they need to live a life filled with health, hope and happiness.
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