- With a broken voice Queen Letizia's emotion when remembering Marco, a child with a rare disease that touched her heart: "He looked at me and that was enough"
Alicia Rebollo was the mother of three children, before dying at age 42 as a result of a tumor on June 17 in León.
She was also the wife of Ricardo Fernández Morueco, whom she entered in the short story contest of the 'Supercuidadores Award' of the UNIR, which rewards family or professional caregivers.
Just 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 breathing problems such as apneas, specific facial features, or digestive problems.
Because of his illness, Marco needed 24-hour care and surveillance. 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, Marco and herself, but also her two other children, Jimena and Darío.
Marco died last December and, at the Official Act of World Rare Disease Day in Santiago, Queen Letizia dedicated a few words to him.
Alicia, as her illness progressed, gradually lost the ability to speak.
She decided to enter her husband for the Super Caregivers Award.
"My husband would never apply for an award of this nature," Alicia writes in her testimony, which highlights Ricardo's selflessness 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.
- Lion
- Rare diseases
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