Friday, August 8, 2014

Remember the Guatemalan brothers?

 Our loyal readers will remember this story below, which we first wrote in March. 
In hospital, 1/14

This family was found residing in a rural Guatemalan hospital after the loss of their rental shack, their sibling and their income. Because of the lack of knowledge about the genetic skin disease the boys have, the court system was going to go through legal means to also remove the brothers from their mother's care. In the eyes of local medical staff, the ulcers caused by EB looked like child abuse. 
For those of you who haven't read the story before, here is the correspondence that first came out of Guatemala when we were asked to assist this family:

In hospital, 1/14
"The 2 brothers are; Larry, 8 years old. And Arles; 4 years old. Their mother’s name is Navia. Both brothers are suffering from burning, much itching all over their bodies and also in their mouths, tongues and throat, and it also affect their eyes. The nurse said aging skin disease, but they don’t know exactly what skin disease the boys have. The nurse and social worker said they have no treatments for the siblings in the hospital, and asked me to search for help for the brothers. The mother and her 2 sons now live now in the hospital temporarily; they do not have their own home. The mother is a single mother. She also has a daughter, but she does not have the disease, and now her daughter is in a special shelter for children in another city. I saw that the mother does not have many teeth. Her two sons have not received exams or treatments by dermatologists."

"And their mom asked me if it can be possible to give her a document; Constancy (as a proof) that her sons will receive help from FFF for medicines and food that she can give to the judge. She said this can help her so that they don’t take away her sons, including her daughter. She asked if that document can include the names of Finding Freedom helpers, with their signatures, and my signature. What do you think?"  
"Navia said yesterday if possible a letter with stamp from FFF it can be a great help for her. With the doctor certificates from Dr. Cabrera (who made the genetic diagnostic) and executive director of the national hospital, perhaps it can be enough to help her so they don’t take her sons and daughter away from her." Roland.

Their sister, waiting to come home

To make a (very) long story short, several generous donors, one determined FFF facilitator in Guatemala and many hours of documentation came together to change the fortunes of this rag-tag little family. 
Nurse Geri who works with The DEBRA Society in NYC (DEBRA web site) went to the trouble to send a large box of special creams, bandages and antibiotics to our facilitator in Guatemala, who hired a private car to get such a big box of miracles to the family. He spent hours with mama Navia, teaching her how to care for her son's skin with the donated products, so that Arles would not have to suffer the loss of his hands like his brother has. Geri in NYC is working with surgeons in Guatemala to arrange donated surgery for Larry so his fingers can be surgically separated.

Everyone looks healthier!

Shopping for groceries with mama
















Meanwhile, FFF has paid for rent for the rest of the year in the room you see (R), the family gets monthly food donations, and the boys have a tutor to keep their school skills up to par. The judge has agreed, after careful documentation and a promise of assistance from us, to release sister S. from the orphanage in a few weeks. 

When our board members first founded Finding Freedom, we had no knowledge of the journey we would take, only the understanding that we were meant to take the first step, and trust that doing so would lead to what FFF was meant to grow into. We are glad that we found our way to this particular family, and we are so pleased with how good they look. 
A special thanks to all of our "FFF villagers" who came together to help this family. They have a long road ahead of them, but at least they will do it with full stomachs, a roof over their head and they will be together. 



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