“For God is working in you, giving you the desire and the power to do what pleases him.” Philippians 2:13 (NLT)
It was Him since the very beginning. God gave us the desire and the will to start and maintain our faith and strength through this amazing journey.
For me, it all started an afternoon of July 22nd of 2014 in the middle of thick books and a very tight study schedule. I received an email from my friend Shannon saying: “…Last week we met a 13 year old boy with a skin condition on his face. I was wondering if I sent you some pictures if you could ask some friends you know for a diagnosis.” I read a summary of Jerzon’s disease and I thought that in order to get the help we needed from a specialists it was necessary to have more information. I thought that a simple phone call with Jerzon’s parents will be enough for the moment to start to investigate him; but after a very confusing and terrible call signal, the necessity of having a meeting with this family was obvious. However it wasn’t possible for me at that time to personally met them, so I started talking to any doctor I had in mind that could help us. They gave us different ideas, but nothing clear. Nobody could tell with certainty what was wrong with Jerzon. I must confess it was starting to upset me the fact that I’ve never had seen this boy in person and it still didn’t seem possible for me to meet him because not a single aspect in my life allowed me to go to San Lucas, Jerzon’s village. We started to have contact in September 1st with his current dermatologist from San Pedro Sula, Dr. M. He thought that Jerzon had a condition called Epidermolysis Bullosa (EB) diagnosed in January, but Jerzon wasn’t attending his appointments lately. Our hearts started to get so heavy and sad, because EB is a genetic condition that doesn’t have a cure and the life expectation is less than 30 years old. We thought that the best we could do at that moment was to make him go back to San Pedro Sula and make sure he attended every appointment so he could restart the treatment as soon as possible. We continued the communication bridge between Dr. M. and Jerzon for many months. I wrote Dr. M. often and he always wrote me back. Then, in December, 2014 and January, 2015 we didn’t hear any news from Jerzon. In February 2nd, 2015 Dr. M. wrote me: “…According to the evolution of the case I think he could have a Erythropoietic Protoporphyria. We need to treat him with Plaquinol (hydroxychloroquine) for a long period of time and prevent sun exposure.” This suspicion started and was informed to Jerzon’s parents in December of 2014. Now I think of the frustration that this family probably experienced after the doctor told them that the diagnosis and treatment had changed. You’ll see, we learned later on, that this wasn’t the first time a doctor tried to treat Jerzon and thought to be so sure and then treatment didn’t worked well and it was necessary to investigate again.
I want to stop here for a minute and explain how this all situation has been for Jerzon’s parents. They explained to me the 11 years of bewilderment and sorrow… So many late night and early morning cleanings, many days of fever; life threatening situations in strange cities while he was being wrongly treated, so many tears and prayers, so many days of fasting… Church reunions entirely dedicated to pray for Jerzon. As time progressed, they were more superficial and brittle to words of encouragement. Those words you think people say without meaning it and what they do is to only increase the feeling that this situation is running out of your hands, drowning the hope that God one day will finally open the way out door.
After walking such a rough journey, I believe they have asked God an explanation of why their youngest was the only sick child in the family of 13 healthy brothers and sisters since he was 4 years old, and why did he had to fight so hard against a disease with no name. Little did we know that the time to get answers was closer than we could ever imagine. God was already intervening in the hearts of many people, inside and outside of Honduras. He was preparing us to see and experiment His amazing works, works that had His seal all over them proclaiming Him as the only Author of this eternal plan. A path was ready to be walked and a miracle with the word “Grace” written everywhere, was starting to happen in the life of a 14 year old boy.