A long race between Catalonia and Cantabria to make Dravet syndrome visible

One of those classified as a rare disease, Dravet syndrome, already has its champion. He is Cantabrian, from Corvera de Toranzo, he lives in Catalonia and wanted to unite the two communities in a challenge that has sought and managed to give visibility to this disease. Pedro Aguado Calderón has undertaken 640 kilometers from Sant Feliu de Llobregat to Puente Viesgo, 13 stages in 15 days of crossing (from October 28 to November 11), running and cycling, through countryside and road, with a approximate average of 50 kilometers a day which, as he himself said, have never been accomplished, “they have always been more.” In that journey there has been time for everything, to suffer, to get excited, to want to quit, to smile and, above all, to fight physically and mentally to achieve a little more fundraising in the face of an investigation that is advancing by the moment.

Pedro had a special motivation, Daniela, a beautiful girl who suffers from this disease and has immediately fallen in love with Cantabria, like her parents, Raquel and David, staying in Puente Viesgo this weekend to be in the last stage of the challenge, because to challenge, as Pedro said, theirs, that of all those who deal with a disease like this every day.

Dravet syndrome is a rare serious disease that causes epileptic seizures, intellectual dysfunction, behavioral alterations and high degrees of disability. Work is already underway in several fields to find a remedy, explained Daniela’s father, “and we are excited.” As excited as they are about Cantabria’s response to their demand to continue researching the syndrome and rare diseases with epilepsy, promoted by ApoyoDravet, through the scientific network INDRE (International Research Network on Dravet Syndrome and Refractory Epilepsy).

Currently, INDRE has 14 research groups, more than 50 researchers in 12 centers where work is carried out at the scientific forefront for the cure of Dravet syndrome and rare diseases with epilepsy.

On the adventure they immediately had another traveling companion, the mayor of Puente Viesgo, Óscar Villegas, “offering his support and commitment to the project from the first moment,” as Pedro Aguado noted at the finish line. The mayor even joined those who have accompanied Pedro in running in the last stage, ending on the Greenway, in front of the old railway station. “In these challenges you will always find us, it has been a pride for us to participate as much as possible,” said the mayor.

Raquel and David, Daniela's parents, along with Pedro Aguado and the mayor of Puente Viesgo.

Raquel and David, Daniela’s parents, along with Pedro Aguado and the mayor of Puente Viesgo.

GUINEA PIG


About twenty people were waiting for the participants at the station, applauding, grateful. The last to cross the finish line were Pedro and Daniela, hand in hand, looking at each other, he knowing that the effort would pay off, she thinking about the party she was watching, delighted with everything she was experiencing.

At the finish line, Pedro explained that «two years ago, through a well-known friend, I had the opportunity to join a group of people affected by Dravet syndrome. Since then, I have dedicated myself to running for this noble cause, converting each kilometer run into a way to raise funds to support those who suffer from this disease.

Leave a Reply

Your email address will not be published. Required fields are marked *