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Ramiro Merlo, a 15-year-old boy, suffers from cystic fibrosis. | Carlos Merlo

Boy with cystic fibrosis pleads for Pfizer vaccine

His fight goes beyond the vaccine. He struggles to leave a legacy. He wants to show everybody that they must treat people with diseases like his.

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Carlos Merlo
First-person source
Carlos Merlo fights for the vaccine for his son with cystic fibrosis. This terminal disease makes him a risk patient. Due to his age, he cannot be inoculated with another vaccine from the Pfizer laboratory since it is the only one approved worldwide for young minors.
Background
Argentina is one of the countries that did not close the agreement with the Pfizer laboratory. Negotiations have been established since the announcement of the vaccine.

The Latin American country so far is vaccinating with Sputnik V, Sinopharm, and AstraZeneca. In the last hours, signed an agreement with the Chinese CanSino laboratory.

Argentina is the country with the longest strict quarantine in the world. This did not prevent the increase in COVID-19 cases, which led the country to lead the ranking of countries with the most deaths per million inhabitants.

According to the Argentine Association of Respiratory Medicine, Cystic Fibrosis (CF) is a serious autosomal recessive hereditary disease caused by mutations in the gene located on the long arm of chromosome 7. It was only in the 1980s that it was discovered that the fundamental defect is due to the altered exchange of chlorine ions in the exocrine secretion glands. In 1989, the isolation and characterization of the responsible gene that encodes the transmembrane conductance regulator protein (CFTR) were achieved, which acts as the main chlorine channel in the membrane and influences other ions (calcium, sodium, etc.).

This gene causes an alteration in the production or normal functioning of the CFTR protein that is found in the apical membrane of the secretory epithelium of the mucous glands of the air, digestive, reproductive, and sweat tracts.

In Argentina, the incidence of the disease is approximately 1/6,700 newborns, and of these, around 60.4 per cent have a diagnosis before the first year of life, where neonatal screening plays an important role (National Law 26279).

The establishment of adequate treatment in an early form, the knowledge of pathophysiology, and the attention of a specialized team make it possible to reduce the progression of the disease and increase survival, calculated in around 40 years in developed countries. The prevalence of healthy carriers of the mutation is approximately 1/40.

BUENOS AIRES, Argentina — I am a desperate father, fighting for my son’s life because my government and Pfizer could not reach an agreement.

My son Ramiro is 15-years-old and has cystic fibrosis, which is a terminal illness. Because of his age, he can only receive the Pfizer vaccine, but Argentian officials could not come to terms with the company.

As a result, we lost out on 13 million doses. We wonder if we will get any of the vaccines set to be donated by the United States and other countries.

Meanwhile, we are a society in isolation.

I don’t care about the disagreement between the government and Pfizer. I want my son to receive his vaccine. 

Ramiro Merlo
Ramiro Merlo, a 15-year-old boy, suffers from cystic fibrosis, with his dad. | Carlos Merlo

Ramiro’s disease and the pandemic

When Ramiro was in his first month of life, doctors discovered he had cystic fibrosis.

It is a genetic disease and causes poor circulation of chlorine that makes all the fluids in Ramiro’s body thicker. As a result, it causes severe complications with breathing and the pancreas, among other things.

Since he was born, we began a routine to ease his pain. Fifteen years later, we are still fighting. There are no weekends or holidays from the disease.

Every day, religiously, he undergoes four nebulizations and two kinesiology sessions totaling four hours of therapy.

Still, before the pandemic, at least he was surrounded by nature and friends. 

Now his daily kinesiology sessions are suspended, and he is trapped in eternal isolation. In addition, restrictions have prohibited contact with physiotherapists, although they remotely monitor his treatment.

To replace his suspended treatments, he wears a vibrating vest that, while not the same, somewhat alleviates his pain.

Isolation 

The most challenging part of the pandemic, without a doubt, is the isolation.

We have been confined at home since March 2020. Ramiro has not been out on the streets. We, and the government, strictly prohibit it.

We are terrified of possible contagion since the damage to his body would be irreversible.

He stopped going to school. Although he continues to study virtually, it is not the same. He misses his routine and the contact with his friends.

Until he gets the vaccine, this situation seems to have no end until he is vaccinated with the only one he can receive: Pfizer.

As a father, I see his mood changing as he becomes more and more listless. At times, he is outraged at the country and tells me that he no longer wants to live here.

Too scared to leave Argentina

I have American Visa, but I do not dare to put my son on a plane.

What happens if, by wanting to save him, he catches the virus while traveling?

Because of his terminal illness, if he caught the virus, undeniably, his fate would be death.

Fear paralyzes me.

Every day that passes is torture to see him locked in my house. I wish he could enjoy nature as he did before.

We try to maintain hope.

Our desperate request

As I have watched my son grow, I am amazed by his resilience. He has a different view of life from most people; he is strong, and I admire him.

That fighting spirit led him to make a video in which he pleads with the country’s authorities for the only vaccine that gives him hope to change his life.

His fight goes beyond the vaccine, though. He struggles to leave a legacy. He wants to show everybody that they must treat people with diseases like his.

In Argentina, political fights between one party and the other are commonplace, but this one is causing my family and so many others to suffer. 

Translation Disclaimer

Deliberate effort is made for all stories that have been translated from the journalist's and/or subject's native language into English or vice versa to ensure the utmost accuracy in context and meaning.

Descargo de responsabilidad de traducción

Se hace un esfuerzo deliberado para todas las historias que se han traducido del idioma nativo del periodista y / o del sujeto al inglés o viceversa para garantizar la máxima precisión en el contexto y el significado.

Natalia Medina is a journalist and producer who works in graphics and radio who is always looking for stories to tell.