The Cayetano Heart foundation for Giant Cell Myocarditis Research is established in memory of Cayetano, my 14-year-old son, who died from this disease, and in the hope of preventing another family from going through the same ordeal that I had to endure.

GCM is a rare, extremely serious and rapidly progressing disease, and in many cases, it is only diagnosed through an autopsy or a pathological examination of the removed heart. It mainly affects young adults or middle-aged people in good health. It progresses within a couple of days and, in most cases, by the time it is detected, it is already too late. Just as happened to my son.

The incidence rate is between 7 and 51 cases per 100,000 people. Therefore, it is not a disease that large pharmaceutical companies consider profitable to research. However, for me, 0.007% means everything when it comes to a loved one.

The aim of the Cayetano Heart foundation is not only to carry out medical research with the aim of finding early diagnosis, alternative treatments and, ultimately, a cure that does not involve a heart transplant. It also aims to raise awareness of the condition, help families facing a similar situation, assist with administrative and bureaucratic procedures, provide psychological and emotional support to patients, family members and carers, and facilitate the necessary contacts.