The brave Malaga boy with a rare disease who dreams of becoming a policeman

As five-year-old Marco from Malaga left the city's children's hospital he was accompanied by blue lights, sirens and uniformed policemen who were waiting for him at the hospital door to escort him back home after overcoming Menkes syndrome, an ultra-rare disease that affects copper levels and which many sufferers do not live beyond early childhood. However, little Marco has defied the odds and is now walking, running, speaks two languages and has now fulfilled his dream of being a policeman for a day.

Marco was born with a short life expectancy and palliative treatment as his only option. But he was also born with a courageous mother who never gave in. The little boy is now five years old, he dreams about fighting criminals when he grows up and from his attic in the city's La Misericordia district he watches the police officers that patrol Calle Pacífico.

He was admitted to the Materno-Infantil Hospital in Malaga at the end of June with a triple infection in his lungs that was "very dangerous" as these organs were damaged. The first hours were critical. "He went in, but we didn't know if he was going to be able to come out," said his mother, who refused to give up on her son.

As he left the hospital a patrol car would be waiting to escort him back home, his mother had told him. After ten agonising days, the moment arrived. At 12.30pm Marco left the hospital and "his face lit up" when he saw the officers. One of the policemen remembers it as the "hardest and most gratifying service" he has given in almost two decades of working as an officer. "It all came about spontaneously and they themselves offered to do all this. Their human quality is impressive," his mother said.

Marco still faces many limitations. "He doesn't have much strength and his life is very limited. While other children of his age are overstimulated, Marco lives a bit in a bubble and an experience like that of the police has a huge impact on him," explains his mother. So much so that, since that day, he has not stopped talking about it and he continues to ask for stories about cops and robbers every night before going to sleep.

Marco also met police dogs Zaika and Zamora on a visit to the police station, saw a helicopter flying overhead and was even given gifts including a letter from the officers which read:

"Dear Marco, we would like to thank you for visiting the Malaga provincial police headquarters. It has been a pleasure for us to have you in our facilities and for you to enjoy some of the units that are part of our institution. The fact that you love the police so much and like our work is what gives us the strength to keep on wearing this uniform that we love so much. With your affection you have shown us that you also share our values and that makes you one more member of this great family, the National Police. A big hug to our officer Marco", concludes the letter.

His mother Aurora Mateos, a consultant for the United Nations' Food and Agriculture agency (FAO) as a lawyer and writer, has devoted her life to that of her son. "The dedication is complete. There's something to do every hour," she says with commendable fluency despite not having slept the night before. Her tireless fight has made Marco a unique case in Menkes patients, becoming the first child in the world to receive a pioneering and experimental treatment to treat the disease.

Marco was diagnosed with this gene, which causes an alteration in the transportation of copper in the body and prevents its proper distribution to vital organs including the brain, shortly after birth (although it should be noted that ignorance of the disease means that most children die before they are diagnosed). He did it in Rome and his doctor decided to test him when his hair caught his attention. It was 2020 and that year a successful University of Texas trial to combat the disease was published in a scientific journal.

The treatment had been tested only in mice. But in animals, it showed an improvement in mobility and survival from 20 to almost 200 days. With a bleak prognosis, Aurora began a journey to get the Spanish Medicines Agency to authorise the drug to be administered to her son. Finding a hospital that would join the race against the clock to save her son's life was no easy task. But she succeeded. In January 2021, doctors at Sant Joan de Déu in Barcelona began injecting him with the drug. In just a few months, Marco went from severe pulmonary fibrosis to taking his first steps.

Despite her son's progress, Aurora did not stop then either. She founded the International Menkes Association, a network to other families with children suffering from the disease around the world and provide them with the same treatment. "We firmly believe it works. Although he is chronically ill and has his limitations, he is nothing like a normal Menkes patient. He has even been able to go to school for a few days this year. However, the maxim for this tireless mother is "to learn to live with the disease, to laugh and enjoy as much as possible because the day is today."