I can’t believe that more than three months have passed from that September 1 biopsy day. As I recall these events, I can see how the hand of God was providing us in every need through so many people that extended their hand in every possible way. Through the prayers of those who accompanied us in this journey,  God also provided faithfully for our spiritual needs. As I write this, I realize I won’t be able to count all the wonders God has made in our lives this past three and a half months, but that does not prevent me from trying…

On September 1 Jerzon and I were in the doctor’s clinic in Sta. Rosa. While we were preparing for the biopsy procedure, the doctor and I talked and agreed that we needed to do all the testing available in the town that day, since we were subjecting our patient to a painful procedure and the resources were at hand. I was going to take one part of the samples to the Public Health Region of the town and the other part to the organization that was going to process the samples that we were sending to the US later that week. I told her about the conversations that Carol and I had about Leishmaniasis and I must confess we were both a little skeptical about having a positive result that day.

As we entered the laboratory of the Health Region, I remember I told Melyssa Cardenas who was with us that day: “Don’t worry this won’t take too long. Everything will be negative, you’ll see…”  After nearly an hour of waiting, the microbiologist called me. I said: “No way… you found something, didn’t you?” after she told me what she had found, I replied: “I want to see it too, please” I was trying not to show too much excitement while Don Roberto and Jerzon were looking at us. About 20 minutes later I called Shannon, almost unable to speak, saying that we thought we had seen “amastigotes”, a form of the parasite that causes Cutaneous Leishmaniasis. We had a diagnosis and it was curable!

Leishmaniasis is a widespread parasitic disease that it’s currently denominated for the World Health Organization as a “neglected” tropical infection, the estimated disease burden of leishmaniasis places it second in mortality and fourth in morbidity worldwide. The parasites are transmitted to humans by sandfly bites. In its more common cutaneous form, it is characterized by ulcers that form especially in the face, and even after healing, they may disfigure a child and lead him to a social stigma. As we were familiarizing with this information and while we were discussing the treatment options, the desire to provide special care for Jerzon became stronger. We wanted to administrate the medication ourselves and having him close by to monitor and treat any medication’s side effect. This antiparasitic medication could lead him to liver failure and heart damage, besides other serious complications. As we were sharing Jerzon’s diagnosis to other people and his particular situation, the help came instantly. The government trusted and provided us their medication to treat him outside of his health unit, and the kindness of so many people allowed us to rent an apartment for what we thought at the moment, 28 days of treatment.

Today, while we I was helping Jerzon to get ready to go back home I shared with him how scared I was of he being my responsibility. I wasn’t just going to be his doctor; I also took the responsibility of taking care of his studies, tutoring him so he would not lose his school year and making sure he will remain being the top of his class by the end of the year. I was going to make sure he had an adequate nutrition. Look for him in every possible way, making sure he had everything he needed. And above all, with God’s help, I was going to take care of his spiritual needs. What a challenge! I was just starting to familiarize with that, when Jerzon’s family told me that another boy was going to stay with us, Dauny, the 13 year old Jerzon’s nephew.  And that’s how everything started as “Melissa and her boys.” Yes, one day to another I became a new “mom” with two teenager boys. I couldn’t have done any of this without Kristi’s advice and wisdom. I certainly enjoyed so much having mom’s conversations with her. The Hopkins family supported us in everything, and we are so grateful for all the sacrifices they made in order to make this boys feel loved and comfortable, spending time with them and giving me once in a while, a much needed rest… During the first weeks I got to thinking that this was going to be easy. But as long as the days passed by and Jerzon needed more time to stay in Gracias to heal properly, things started to be complicated.  Oh yes, THEN I became a mom. We went through so many things medically and emotionally speaking. Jerzon had a side effect of the medication strong enough to scare us all. He also was starting to become impatient and more homesick. They were times he refused to do what it was required from him to heal (and he started doing things that he thought would accelerate the healing process and did exactly the opposite, like picking scabs). What a journey. It’s so wonderful that now Jerzon, Dauny and I can sit and remember with a lot of laughter and gratefulness these days.

I love my boys so much and I’ve learned so much from them. God has shaped us and we are a family now. I’m so privileged of being one of the few people in Jerzon’s life that can actually see him beyond his disease. I’m able to read him so easily most of the times. He has become in the happiest boy I ever knew and I’m not ashamed in saying that his joy becomes automatically in my joy and if he feels sad, I feel sad too. I get desperate if he gets desperate. We feel strong together and sometimes, we’re ok feeling weak. I have understood the meaning of Romans 12:15 when it says “Rejoice with those who rejoice; mourn with those who mourn.” I can say now that no one should go through life without experiencing once what is like to spend ourselves for others. Yes, it can be painful and hard, but also constitutes in one of the greatest joys of a lifetime.

For me this story it’s a circle of grace. As we recall these events, we keep drawing this circle starting and ending at the same point, in God’s amazing grace. We recently informed Jerzon and his parents about a new discovered diagnosis. There was a sin that was invited in their home many years ago, and it came to light. It followed Jerzon’s parents and their beloved son for all these years. Jerzon was born with a undiagnosed Congenital Syphilis. At this moment with information we have, we believe this make him susceptible to get Leishmaniasis when he was 4 years old and at the same time it allowed the parasite to cause so much damage in his skin leaving uncommon lesions that distracted so many doctors, making hard to even consider it while they were investigating him. And in the middle of treatments, cleanings and who knows what other things, the leishmania parasite could have been hiding under the effects of the Congenital Syphilis, not showing itself under any microscope. But during all this time, our merciful God didn’t allowed this parasite go further from Jerzon’s skin. Several species of leishmania can go deep into the nose and throat and destroy them completely. Also, a process of inflammation of 11 years could have caused skin cancer in our boy.

I think don Roberto, doña Francisca (Jerzon’s mom) and Jerzon himself, now acknowledge a God full of mercy in a deeper meaning. I know that this family will trust His works not only because they have seen and lived His grace towards Jerzon and them through all these years, but because there is a certainty deep inside that doesn’t matter what happens, God will never abandon them. They know, with that amazing faith that has been constantly provided by the Holy Spirit since they embraced God’s salvation; that there is so much more faithfulness to see, so many more answers to be given and a permanent healing for Jerzon. We believe this too, and we know that our journey will keep continuing until God’s purpose may be completely fulfilled in our boy and his family, in us and in all the people that so graciously and devotedly had stand with us in this path.

“Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.”
Philippians 1:6

November 15, 2015.

“Because you know that the testing of your faith produces perseverance.” James 1:3 (NIV)

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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 4^th. 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?

 

“For God is working in you, giving you the desire and the power to do what pleases him.” Philippians 2:13 (NLT)

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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.