Tuesday, December 30, 2014

Happy New Year from New York City to Guatemala

Epidermolysis Bullosa (EB) – “The Worst Disease You've Never Heard Of.” 
Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder, the most common symptom is extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is  painful and debilitating, and is in some cases lethal before the age of 30. EB affects 1 out of every 20,000 babies and those born with it are often called ‘Butterfly Children’ because their skin is as fragile as the wings of a butterfly. There is no treatment or cure. Daily wound care, pain management and protective bandaging are the only options available.

Finding Freedom through Friendship Vice President Mike McNevin and myself have met thousands of patients in Guatemala, but we had never seen children with EB until we took these brothers into our program in March, when these photos (L and R) were taken. One of our facilitators, Roland, had been asked by Guatemalan hospital staff to find help for the boys and their mother, all of whom were homeless and living at the hospital. The staff struggled to meet the medical needs of this family; they weren't sure of a diagnosis, they lacked proper medication to treat the boys and funding for adequate nutrition for the family was lacking. 
Many of our readers are squeamish about seeing medically graphic photos, especially of children. We won't go into pictorial details; it is enough to know that the boys were suffering. They had numerous bleeding ulcerations on their skin that wouldn't heal, they bruised easily and they were malnourished. Teeth were rotten; eyes dry; fingers were fused and their misery scale was as close to a 10 as it could get. 
To condense a year of our efforts helping this family into a short blog post would be a long post indeed. 2015 is a new year, and it will start off so much better for this little family than 2014 did, thanks to their many "angels" who came together on their behalf. Donors, facilitators and board members; Guatemalan church members, and most importantly, a nurse in New York City named Geri who was kind enough to answer one more email at the end of a busy day on March 4th when I wrote and said, 
"You don't know me, but I am seeking help for two little boys in Guatemala."
Here is what she replied:
Hi Jody, Where in Guatemala are you working? I ask because I used to live in Saltan, Baja Verapaz. I have attached some information for you and the local doctors to review. Please ask me any questions you have. Are you able to send me the boy's names and DOBs for my records? I look forward to working with you. Best regards, Geri Kelly, RN, BSN EB Nurse Educator, debra of America  
Many months later, the brothers are in FFF secured housing, their mother has a part-time job, the boys get food deliveries from us monthly and Geri has sent two big boxes of medical supplies from NY city to Guatemala to help with wound care needs. Their mother will struggle to care for her children for as long as the boys live. We can't predict the future for this fragile little family, but we can make their time together more medically and nutritionally sound, and emotionally support a mother who is carrying a burden of poverty, as well as being a single mother to very sick children. 
We can't show the medically graphic photos, but we can share new pictures from last week, when a family, now united and healthier, celebrated Christmas the way it was meant to be.  
(Thank you to board members Faby (Left) and Vinnie for delivering toys to the family on our behalf)