When a parent is asked how much love a child has, they remain silent because of the stupidity of the question. However, when the same question was asked to Marbis Zamora Verenzuela, mother of Alma Lamón Zamora, she had a more precise answer: more than 8,345 kilometers.
That’s the distance this Venezuelan mother traveled from her native Guarico to the United States in search of a cure for her little daughter who suffers from a rare disease that is rare in the world where there are only 55 registered cases.
Alma developed a strange genetic mutation that caused her Macondian disease, which, among other symptoms, caused a failure in her development so that, over time, she would forget the something as basic as talking, walking or even breathing.
From the first years of the girl’s life, Marbis noticed that something was wrong with her daughter, because she suffered from violent attacks and when she was young she did not dare to crawl. In addition, the mother noticed that the girl had difficulty raising her head on her own.
Alma began to receive the “treatment” available in Venezuela, while her mother and uncles continued to make the complaints they made against the dictatorship as human rights lawyers. However, in 2020 and when the girl was four years old, the situation became unsustainable, because in addition to the Chavista government’s political persecution of human rights defenders like Marbis, the purchase of medication to keep Alma under control became an odyssey. According to him, the government itself took it upon itself to deny them.
Because of this, the mother, the little girl and her family began an uncertain journey from their hometown to Medellín, where they settled in the neighborhood of Villanueva.
“I started selling red wine and kept a low profile and I even disappeared from social networks because of fear. It’s hard to leave everything because you don’t agree with a regime like Maduro,” he said.
In these three years, Alma’s situation has not changed much. Headaches and bone pain were added to the almost daily epileptic seizures. In addition, forgetting basic things becomes constant.
Marbis, the head of the household, takes care of his daughter almost alone. Fortunately, he was supported by the María Auxiliadora Patronage Foundation and was thus able to manage Alma’s care at the hospital of Pablo Tobón Uribe and the Neurological Institute of Antioquia.
“They even supported us with a genetic test that had to be sent to Brazil and which concluded that the woman suffered from the mutation that characterizes Nedamss syndrome,” explained Marbis.
Upon learning of the devastating diagnosis, mother and daughter also found a little hope. In Berlin a doctor is researching a drug based on gene therapy to restore the gene that causes Nedamss. The point is that the $150,000 treatment should be personal. Although he did not know where to get the money, he did what he could to save money but it was not enough. As Alma was hospitalized more often, she lost strength in her legs, her eyesight and memory failed.
But that did not discourage the mother, who continued to look for options. Shortly after that he learned that the Cincinnati hospital in Ohio, United States, was also looking for a cure. Marbis contacted Dr. Loren Peñas and they agreed that if Alma comes to the city she will be a candidate for treatment.
After doing the math, the mother realized that the only option to go to the United States was through Darién. Because of this, on July 21, Marbis, Alma, her other daughter Yudith and other family members started the journey. At first they arrived at Necoclí, later they took the Carreto route on July 28 in search of Panama via Darién. Crossing the inhuman forest that normally takes two days took four of them. In the journey of the girl did not stop shaking.
“I brought a bag with more than 20 bottles of medicine, as well as the food we ran out of on the second day. Everything got worse when we crossed Loma de la Llorona, the attack was so strong that the woman was unconscious, that day I regretted taking her to the forest. When I woke up he told me that he couldn’t take it anymore, that he was going to leave her in the forest. On the third day we were dragged down a river for about 200 meters and we almost drowned. Thank God many people helped us along the way. They told her: ‘Alma, you can do it, you are strong!’” said the woman.
After crossing the border jungle, Alma had to spend a night recuperating in a hospital in Panama. Then they continued to Costa Rica, Nicaragua, Honduras and Guatemala. In the latter country, the family was detained by local police who demanded $150 to move on.
“Mexico is worse than the jungle. We took a raft to the state of Hidalgo and there we looked for a taxi to Tapachula because they don’t sell tickets to foreigners. There we were kidnapped by armed men who demanded money from us. I tried to get them to move on, but nothing. At one point the woman started shaking and they released us after eight hours. We left Tapachula, walking and taking one form of transportation or another. We stayed like this for 15 days until we arrived in Monterrey and there we admitted Alma again to the hospital because she decompensated a lot,” said the mother.
On August 30, Alma was released from the hospital. The group waited until September 6 to board the train that would cross there. Aboard their wagons, they reached Piedras Negras, near the crossing of the Rio Grande, the border between Mexico and the United States.
“On September 7 at 11:00 in the morning, we crossed the water up to our necks. The woman carried him on her back. Alma has a headache because of the sun and the stress she experienced on the train the day before. We crossed as far as we could, and on the United States side the border guards caught us and the woman was convulsed again. The officers attended to us and called a doctor for Alma. This is how they brought us to a migrant detention center since September 8,” he recalled.
When crossing the Río Bravo Marbis held and kept the documentation showing his departure from Venezuela as a political exile as well as Alma’s unusual illness. It doesn’t matter that the river stripped him of his cell phone, clothes and other things. The important thing is to save the folder that proves that journey for almost three years and three continents.
“When I was arrested I gave the letters and medical information to an agent. Later they interviewed me asking me why I was asking to enter their country and I told them that I was afraid for my life and that of my daughters. In addition, Alma underwent a medical evaluation and the doctor confirmed that she had a rare disease and that there was an option in Cincinnati. On September 11, an immigration officer approached us and said: ‘Welcome to the United States.’ Alma and I cried for joy. The woman told me: Mommy we did it, we did it. I’m really good!’” Marbis recalled.
Once in the United States, things got better. They arrived in Louisiana where relatives gave them shelter and from there finally to Cincinnati, where they arrived on September 23 with the help of American foundations. There it was confirmed that Alma is a candidate for treatment as long as she can afford the advance payment set at $30,000.
“I am happy to be in the United States and very excited to start my treatment and I hope one day to return to Medellín,” Alma commented through a voice message.
Now Marbis’s fight is to get money from a country he barely knows. So, as much as he can, he uses the products he makes himself and also asks who can help him for a support. To do this, you can write to the Instagram account @almamividacontrareloj or the Alma Lamon Facebook account.
Marbis moved heaven and earth so that his daughter could live and have a more normal life. In fact, the girl is already in her first days of school. But maybe now is the time for more people to join this cause so that the long journey can help save little Alma’s life.