Meet Mattia Fagnoni
Posted on May 08 2012
Mattia is one of the few children born with Sandhoff Syndrome: a genetic, degenerative, and fatal disease. At only 10 months, Mattia developed early signs of Sandhoff--inability to crawl, sit, and function as a developing infant. At the age of twenty-seven months, Mattia lost his sight and ability to exercise motor skills.
There is no cure or standard treatments for Sandhoff. The first symptoms begin before six months of age. Muscle deterioration and inability to create enzymes needed within the central nervous system to break down toxins cause: motor weakness, blindness, deafness, inability to react to stimulants, respiratory problems, infections, mental retardation, seizures, enlarged liver or spleen and pneumonia. The disease causes a progressive destruction of the CNS and eventually death.
Mattia's parents, Francesco and Simona, have channeled their past experience in public relations to unite artists worldwide to draw a deeper awareness of this illness and those suffering from it. In 2010, they founded the Mattio Fagnoni Association devoted to raising funds towards research--and, hopefully, someday a cure.
KARVT, as well as many other artist and donors, collaborate for the sake of Mattia and those who share this devastating disease. We at KARVT are honored to be a part of Mattia's life and offer our love and support to Francesco, Simona, Mattia, his sibling, Niccolo and their extended community of friends and family.
Mattia has been given no more that a few months to live. Today, tomorrow, and until this disease has a cure, KARVT joins Mattia's supporters and fights for his right to have a chance. And, also extend our sincere hope and strength for other sufferers of Sandhoff and their loved ones.