November 15, 2015.
“Because you know that the testing of your faith produces perseverance.” James 1:3 (NIV)
Erythropoietin protoporphyria is a genetic disease characterized by abnormally elevated levels of a substance called protoporphyrin IX in the blood and it causes very painful photosensitivity in the skin (sun damage) and can greatly impair the quality of life of the patient. We were in the middle of February and almost three months had passed without Jerzon receiving treatment for this disease. After all this uncertainty and me being outside of the country, we tried our best to reincorporate Jerzon to Dr. M.’s care. Honestly, the situation was starting to become so complicated and confusing for me: it was too big for my understanding and too complex for my limited experience as a general doctor. But God was calling my attention constantly, urging me to involve myself more and more. As I began to pack in my last week outside of Honduras, I finally made the decision of planning a reunion with Jerzon and his family and also ask Dr. M. to meet with me personally so I could ask for the pertinent medical records. I spent two days in Honduras and then I took the bus to Gracias full of excitement and so nervous at the same time. I’m so glad God sometimes stays silent to my questions in these particular situations. If I had known what was coming, I would have considered strongly taking a step back, thinking this was too hard and the chances of not being successful were way too high. The voice of the Holy Spirit was so much stronger than my thoughts and more irresistible than my doubts. And so, my faith started to grow more and God did the rest.
I met Jerzon a Tuesday afternoon of May 4th. I loved him the first moment I saw him and I knew that from that moment on, our lives would not be the same. I felt so overwhelmed for the situation that we were getting into, thinking we didn’t have a full understanding of what we were starting and the enormous responsibility that we were taking at the same time trying to help this young man. We were already giving him hope, a hope that I learned later, had been given and taken away very often. And the weight started to feel heavier…
Finally, we were sitting the next day at Dr. M.’s desk telling him that the experts in the United States examined Jerzon’s blood and right there, at the moment, we got the results saying that the disease that he was currently treating (erythropoietic protoporphyria), Jerzon didn’t have it. He kindly gave us all the information he had and offered his services in everything we could need. We were back on a non-diagnosis state, again. An uncomfortable quietness for us that we didn’t understand well, but God was definitely moving. We thought that the next step was taking Jerzon out of the country for a diagnosis. We started to work on the things we could, trying to find out more and more about Jerzon’s story and writing a full clinical history in English. While we were collecting information, a new character appeared: Jerzon’s past dermatologist in 2010. Don Roberto, Jerzon’s dad, spent almost an hour telling us how much this doctor had help investigating Jerzon’s disease, bringing people from the US and sending them biopsies and in the middle of that process, this doctor was able to cure him for a longer period of time than other people in the past. Although the disease came back at the end, we agreed with Shannon that this person was the key in order to complete our medical history and finally send him to doctors in the US to get the help that Jerzon needed.
Who was this doctor? I was praying she was a nice person! I mean, a completely stranger (me) was going to call to her clinic and ask her for a patient she had 6 years ago. After many calls, my insistence and her secretary’s as well, I finally was able to talk to her for a few minutes on the phone on May 13th. She said with frustration and anger how Jerzon’s parents stopped attending the appointments after all the hard work that was done. She told me about the inconclusive biopsy results in Honduras and in the US, and the final and odd identification of one bacteria that responded well to penicillin shots. She was going to look for Jerzon’s medical file and send it to my email. I waited for three more months and after many failed calls and accumulated emails, I thought that it was time to do some stalking. I called Shannon and we settled a date to go to Sta. Rosa and meet this doctor. Later on, with a few laughs, the doctor confessed me how much she was avoiding me every day I tried to communicate with her… Well, she wasn’t avoiding ME specifically after all. I know now that God was already working in her heart before our first meeting. After all, the plans of God and the means he uses to carry them out, are things that for sure we can never escape from, can we?
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