Alicia Rebollo was the mother of three children, before passing away at the age of 42 as a result of a tumor on June 17 in León.
She was also the wife of Ricardo Fernández Morueco, whom she entered into the UNIR ‘Supercuidadores Award’ story contest, which rewards family or professional caregivers.
A little over 5 years ago they had their son Marco, who was born affected by Schaaf-Yang Syndrome. It is a very rare and unknown disease: there are only a little more than 200 cases diagnosed worldwide, and a dozen in Spain.
It can cause symptoms of varying severity, including respiratory problems such as apnea, specific facial features, or digestive problems.
Due to his illness, Marco needed care and surveillance 24 hours a day. He had several machines that guaranteed his life: home respirator, secretion aspirator, pulse oximeter.
In 2021, Alicia was diagnosed with a brain tumor.
Her husband, Ricardo, then took care of the whole family alone, Marco and her, but also their two other children, Jimena and Dario.
Marco passed away last December and, at the Official Ceremony for World Day for Rare Diseases in Santiago, Queen Letizia dedicated a few words to him.
Alicia, as her illness progressed, gradually lost the ability to speak.
She then decided to register her husband for the Supercuidadores Award.
“My husband would never present himself for an award of these characteristics” Alicia writes in her testimony, where she highlights Ricardo’s self-sacrifice and courage.
“Everything he has done that has had public significance has been to give visibility to the disease, raise awareness of the problem of rare diseases and ask for more investment in research.” he concludes her.
According to the criteria of The Trust Project