Luca: The Race for Life

Almost no one knows about IFAP-1 syndrome (follicular ichthyosis, alopecia, photophobia) and it’s not surprising. It is one of those ultra-rare, incurable diseases that only a few people worldwide suffer from. In the Comunitat Valenciana, there is one such case: Luca Sánchez Fornés, a 20-month-old from Dénia. To raise awareness about this disease and help this child, the National Police has organized the first edition of the 'Ruta 091' Charity Race in the capital of Marina Alta, to be held on November 30th, where everyone will run with Luca.

This little "hurricane," as his parents Roberto and Cristina describe him, suffers from a genetic mutation affecting the X chromosome and has extreme photophobia. He needs a long time to adjust to light and must wear special glasses with a clip to block rays and provide 99% darkness every time he goes out in the sun.

To help raise awareness about this disease, the National Police has launched this charity race because "we are not just here to patrol and arrest criminals but also to help society become a little better every day," said Chief Inspector José Luis Fajardo during the presentation of this initiative on Wednesday. With this charity event, they want to give back to the people of Dénia some of the love they receive, which was commemorated with a monument near the police station for their bicentennial.

On the last day of November, they hope to gather as many people as possible for this event. Proceeds will go to those affected by this syndrome with support from the 'Solidaris Dénia' association. There will be a 10-kilometer race, a 5-kilometer walk for "walkers," and a children's circuit for participants up to 14 years old covering between 200 and 800 meters depending on their age.

The start and finish lines will be on Marqués de Campo Street. Adults will enjoy a route along the maritime façade including the climate monument roundabout and Marineta Cassiana promenade. Younger participants will stay within Dénia's main thoroughfare. Registration fees are set at 12 euros for adults and 10 euros for those aged 14 or under. Additionally, there is an option to donate without running.

During the presentation of this charity initiative at Casa de la Paraula in Baleària Port, an emotional promotional video featuring Luca was shown. The mayor of Dénia and family friend Vicent Grimalt and José Luis Fraile, regional director of Banco Santander in Alicante province, which sponsors the race, also participated. Both expressed their full support for this cause and encouraged citizens to participate.

Roberto and Cristina were very emotional throughout the event while Luca ran around the room with a mobile phone or a water bottle in hand. They both expressed gratitude for all the support and affection they are receiving.