Tuesday, 11 August 2020

Venezuela Children Waiting for Bone Marrow Transplants

In a country where getting antihistamines, vaccines and antibiotics proves difficult and finding a donor is almost impossible, a group of mothers whose children are in desperate need of bone marrow transplants are not giving up the fight.

 

Yelitza Parra poses with her 7-year-old son Alyeiner Moises in Caracas, Venezuela, 24 May 2019. Alyeiner has been diagnosed with Severe bone marrow aplasia and needs constant treatment and transplants, especially of platelets. EPA/MIGUEL GUTIERREZ

Only two health centers in Venezuela perform bone marrow transplants, provided there are compatible donors, but with surgery at the private one costing $20,000 and a scarce supply of drugs, treatment is out-of-reach for the average family.

The government of Nicolas Maduro signed an agreement with Italy back in 2006 so that children who did not have donors could travel to the European country for transplants. The program was funded by the state-owned Petroleos de Venezuela, but it has been on hold since 2018.

- paying the bills -

The government blames the United States for the paralysis of the program and says Donald Trump’s government imposed a block that prevents Italy’s Association for Bone Marrow Transplants from paying up.

But healthcare organizations say the problem goes far beyond that, and NGOs, doctors and other health professionals argue that the paralysis is a result of sanctions, given that delays began in 2015 and hospitals started deteriorating at least a decade ago.

A group of 26 Venezuelan children with cancer and other diseases are waiting in line at the J M de los Rios Hospital, the main public pediatric center, for life-saving bone marrow transplants.

There had been 30 of them a few weeks ago, but four have passed away since then. The youngest is four and the eldest 17.

The illnesses and poverty that mark their lives have united their mothers in their fight to save them. They show strength in front of the camera, but cry silently while recalling the critical moments in which they have seen their children’s conditions worsen owing to complications.

- paying the bills -

The women and their children narrate the daily hell they have to go through at the hospital. The waits are long and every day seems to be a battle against death.

“We can’t keep waiting, we have been waiting for too long. Someone goes everyday,” says Evellyne Fernandez, mother to 15-year-old Edenny Martinez, who was diagnosed with major thalassaemia, a form of severe anemia that requires blood transfusions every three weeks.

The teenager, who dreams of becoming a lawyer, has been receiving transfusions since she was seven months old and ended up getting hepatitis C.

And there are other risks too. The young patients need a drug that helps reduce iron levels after a transfusion, but it has not been available since last November.

According to a national hospital survey carried out by the Doctors for Health organization, 1,557 patients have died due to a lack of medical supplies, while there were 79 power outages between Nov. 19 and Feb. 9 at healthcare centers.

Evelline Fernandez poses with her 15-year-old daughter Edenny in Caracas, Venezuela, 23 May 2019. Edenny was diagnosed with Major Thalassemia at the age of one. EPA/MIGUEL GUTIERREZ

Cristina Zambrano, a teenager with thalassaemia who wanted to become a publicist before her condition deteriorated, has been waiting for a transplant since 2014. In 2016, she got hepatitis C after undergoing a transfusion. For her mother Rosa Colina, the hardest part is the multiple stints spent in the hospital.

- paying the bills --

Jerson Torres, 14, was diagnosed with severe bone marrow aplasia. His mom Verioska Martinez says he’s stubborn and sometimes tells her: “If I have to die, I will.”

The lives of these children have been limited, their conditions preventing them from getting involved in regular activities, like playing soccer or going to the beach.

And their growth and development has slowed down too.

The mothers have become like family for each other, united despite their children suffering from different conditions. They help each out other when their children lack the right drugs and even offer their homes up to mothers from other parts of the country who have come to the capital for help.

Edenny was hosting Norilsa Aparicio and her son Oscar Bautista, a 16-year-old with thalassaemia who also needed a bone marrow transplant.

“Moms help each other, sometimes I go to the hospital to ask if anybody has a drug that I need and if someone gives it to me then we switch favors,” says Jaqueline Sulbaran, the mother of 10-year-old Carlon Rincon, who has Down syndrome and leukemia.

Sulbaran says her son has healed but will have to have chemotherapy for two more years. However, his treatment in the hospital is on hold because the air conditioning does not work anymore.

Four children died last month while waiting for transplants. They were Giovanni Figuera, 6; Robert Redondo, 7; Yeidelberth Requena, 8; and Erick Altuve, 11.

Robert and his mom were going to be interviewed by Efe but he passed away due to a complication before that could happen. He had needed two antibiotics for severe infections, but his mother was unable to find them.

The deaths of these children moved Venezuela. On May 26 healthcare professionals and parents came out to protest outside the hospital, demanding solutions to a health crisis that has been going on for over five years.

Article originally appeared on Today Venezuela and is republished here with permission.

Q24N
Q24N
Q24N is an aggregator of news for Latin America. Reports from Mexico to the tip of Chile and Caribbean are sourced for our readers to find all their Latin America news in one place.

Related Articles

PAHO: Costa Rica’s second rapid increase in cases of COVID-19 due to relaxation of measures

(QCOSTARICA) The relaxation of the distancing measures motivated the increase in...

COVID-19: 77 new cases; UN to give Costa Rica “health cooperation” in northern zone

(QCOSTARICA) With an increase of 77 cases, the number of COVID-19...

MOST READ

The epidemiological form (Health Pass)

(QCOSTARICA) Arriving at the San Jose airport (SJO) in Costa Rica requires the completion of the epidemiological form or Health Pass, among other requirements...

Yes, it was possible! INS now offers tourists low rate travel insurance

(QCOSTARICA) After a week of criticism from many sectors, State insurer, the Instituto Nacional de Seguros (INS), announced this Friday the new rates that...

Legislator: Vehicle restriction is illogical and a mockery for municipalities and businesses

(QCOSTARICA) Karine Niño, legislator of the Partido Liberacion Nacional (PLN), says the vehicle restriction of the next 12 days, from August 10 to 21),...

COVID-19 Costa Rica: 586 new cases and 9 deaths in 24 hours;CCSS expands Intensive Care capacity in hospitals

(QCOSTARICA) The total number of deaths from COVID-19 reached 244 on August 10, with nine deaths in the last 24 hours, the Ministry of...

Government yields to pressure from taxi drivers

Threatened by a strike by taxi drivers, the government of Carlos Alvarado gives in to the pressure and puts plans for legalize Uber and...

Costa Rica President signs Law Against Street Sexual Harassment

(QCOSTARICA) In the coming days, the criminal courts in Costa Rica will be able to impose fines and prison sentences for street sexual harassment...

Let's Keep This Going!

To be updated with all the latest news and information about Costa Rica and Latin America.

Article originally appeared on Today Venezuela and is republished here with permission.

Log In

Forgot password?

Forgot password?

Enter your account data and we will send you a link to reset your password.

Your password reset link appears to be invalid or expired.

Log in

Privacy Policy

Add to Collection

No Collections

Here you'll find all collections you've created before.