Candela is a four-year-old girl from Murcia who suffers from a rare disease called pediatric Parkinson’s disease or AADC. Now she is like a rag doll, she remains prostrate most of the time, she can barely move, she suffers continuous crises that leave her exhausted and she has many difficulties eating and other basic vital activities. “Her only chance is the gene therapy operation that some children have already received with success thanks to the work of the Co lumbus Foundation, this treatment will give Candela a new opportunity to live with dignity. Our great dream has always been one day to see her play Candela with her brother, even if she’s sitting down. That’s what we hope will happen “Andres, Candela’s father tells us.
Three out of ten children who suffer from rare diseases like Candela’s do not live more than five years. Under the motto “Light for Candela” and coinciding with the little girl’s fourth birthday, on July 7, Fundación Columbus, with the support of its main collaborator Viralgen VC, held an exclusive concert for two hundred people in an extraordinary setting. the Chillida Leku gardens in Guipúzcoa. The objective was to raise funds to finance the operation with gene therapy for Candela that has a cost of € 70,000. This objective was achieved and the operation will be carried out after the summer at the Brodno Hospital in Warsaw by Dr. Krystof Bankiewicz, the same one who managed to revive Irai two years ago at the hands of the Fundación Columbus.
Irai was the first Spanish kid treated with gene therapy. Like Candela, Irai suffered severe seizures, he could not move or even hold his head, but after the operation he improved day by day, the seizures disappeared and just twenty months later, Irai began to walk. “We say that there are two dates of birth for Irai, one on which he was born and the other on which he had surgery. With that I think we say it all”, says Irai’s mother Carolina. The gene therapy operation is complicated and carries certain risks, but it is also the only hope for Candela and her family.
From the beginning, the event had the support and collaboration of Viralgen, CocaCola, Heineken, Albian Group and Columbus Venture Partners. Some of the most supportive entities have turned to the event, joining as sponsors Banco Santander, Ysios, Salto, PARKE, Basque Innovation Center, Diputación de Guipuzcoa, ADEGI, Grupo Delta, Zucchetti, Highlight, Café Baqué and Allinky.
The San Sebastian musical promoter Get In, whose scope of work extends throughout the Basque Country, Europe, Latin America and the United States, also showed its most supportive side by bringing artists such as Alex Ubago, ELE and DJ Alex del Toro to perform at the event. Artists committed to the cause of Candela and determined to contribute their talent to ensure that the little girl has, as Irai had, her second birth.