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35 Venezuelan children wait for help to undergo lifesaving procedure

Families of children with cancer in Caracas say they desperately need help

CARACAS, Venezuela – At the J.M. de los Rios Children's Hospital in Caracas, Elvis Moreno recently sat down to play Venezuelan joropo music with his cuatro, a four-stringed small guitar. The 15-year-old patient has been receiving treatment for fast-growing cancer cells for about two years. Children clapped, and some knew his name.

His mother, Elba Moreno, said he has earned a reputation at Venezuela's main public pediatric center as the resident musician of the oncology wing. The former member of a youth orchestra also plays the classical guitar and the mandolin, and he likes to experiment with jazz.  

"He takes his cuatro to oncology and other patients request songs and when a child cries because the veins are weak, he plays for them, so they can get distracted," Moreno said in Spanish. "He also plays at the Catholic church near to where we live. There is suffering, and he wants to comfort others."

Elvis has Hodgkin's lymphoma, a type of cancer that limits the body's ability to fight infection. In the United States and Canada, the overall survival rate for pediatric patients with Hodgkin's lymphoma is over 90%. In Venezuela, where the health care system has collapsed amid a spiraling political and economic crisis, they are dying without access to a lifesaving procedure. 

According to physicians, who wish to remain anonymous because of their status as public employees, Elvis is among 35 pediatric oncology and hematology patients at the J.M. de los Rios Children's Hospital who are waiting for bone marrow transplants, a procedure that infuses healthy blood-forming stem cells to replace diseased bone marrow.

Four of the children have siblings who can be donors. Elvis doesn't have a donor, but doctors said his life can be saved with an autologous stem cell transplant, which requires healthy blood stem cells from his body to replace the damaged bone marrow. There are only two centers in the country that are performing the costly procedure.

At Hospital de Clínicas Caracas, a private hospital, the transfer is about $36,000, but most of the children's parents earn only about $20 to $25 per month. About 87% of Venezuelans are living at or below the poverty line. They are also struggling with hyperinflation, which has caused the price of Elvis' procedure to go from $25,000 to $36,000 in months.  

"We go and get an estimate from Hospital de Clínicas Caracas, and it has an expiration date. We have to get one every 15 days because the estimate changes," Moreno said. "The costs are going up and up and up and up, so they have to raise the prices. If my son dies, I die with him. I see the numbers, and I just shake. We just hope for a miracle."

The public hospital's employees said at least four children who weren't able to get bone marrow transplants died this year. Venezuelan officials blamed the deaths on U.S. sanctions against the oil company PDVSA, which used to pay for the procedures in Italy. The opposition blamed the tragedy on mismanagement. Some patients' parents said they were caught in the middle of a political war. 

Jhon Capote and Elvis Moreno are cancer patients at Venezuela's main public pediatric hospital in Caracas. Four patients have died this year unable to afford a costly procedure that is only available at a private clinic.

Jhon Capote, a 13-year-old J.M. de los Rios Children's Hospital patient, said he doesn't care about politics. He wants to be a good volleyball player and to complete his education, but some days his dreams are far away. When he was 9 years old, his parents noticed a mass protruding from his neck and doctors diagnosed him with Hodgkin's lymphoma Jan. 29, 2016. 

Jhon underwent chemotherapy for about six months, and he was in remission until March, when the protruding mass returned. His oncologist started a different type of chemotherapy. He has received three out of four cycles, and his parents fear that his health is deteriorating. 

"I was throwing up and throwing up," Jhon said in Spanish. "I felt weak."

Both Jhon and Elvis travel long distances to the public hospital for chemotherapy. Jhon lives in Valle del Tuy, a town about an hour's drive away, and Elvis lives in Via Junquito​​​, a town with public transportation problems. With Elvis' immune system compromised, Moreno said she avoids using the metro in Caracas.

"He was getting nosebleeds. I had to leave him alone in the emergency room and go to other hospitals to beg for bags of platelets," Moreno said. "This chemo is to hold the disease, but it doesn't cure him."

Elvis has seen the children's health care outcomes deteriorate at the hospital. He decided to use his music to beg for help on social media. He doesn't have access to the internet, so he asked a neighbor to help him create an Instagram account, and he recently recorded a video playing "Caballo Viejo," or "Old Horse."

"I was diagnosed with Hodgkin's lymphoma two years ago, and it has advanced," Elvis said in the video after playing the Venezuelan classic. "I need a bone marrow transplant and this is why I need your generous cooperation since it is very costly ... I want to continue playing and living."

HOW TO HELP

Vanessa Barrera, of Miami's My Pretty Little Gift, is a Venezuelan American cancer survivor who believes in social entrepreneurship. She saw Elvis' video and set up a GoFundMe campaign to raise $50,000 to help. Her goal is to make the payment directly to Hospital de Clinicas Caracas.

Natasha Burritt, a Venezuelan American from Miami, has joined her effort. Barrera said she hopes that more young mothers like Burritt will.  

"No kid should fight alone: 2,500 people donating $20 each can help make this miracle happen," Barrera said. "Children with cancer in Venezuela need true heroes, and we cannot leave them alone. Your support matters."

 


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