SANFILIPPO

NEON | 160 X 55 X 55 CM | 2019

Sanfilippo, a word that sounds like the name of a beautiful island or Italian town, is associated with something nice and safe. It is a rare genetic disease, causing deadly brain damage - mucopolysaccharidosis III. Defined as a children’s disease, because most patients never reach maturity. The condition allows the child to develop properly until approx. 3-4 years of age, and then gradually takes away all the abilities they have acquired, such as hearing, speech and the ability to walk. Finally, patients with Sanfilippo die around the age of 15. There are around 7000 rare diseases, out of which up to 50% affect children. No more than 400 diseases from this category have been approved for supportive therapy. So far, medicine has been unable to find any cure, so it is common to apply only limited palliative treatment. However, recently medical research has achieved a promising breakthrough with real hopes for the future. Sanfilippo was done for Adaś and Lea, who were diagnosed with the disease in January 2016. The neon form was inspired by two jellyfish which, overlapping each other, formed a blue and red composition. I came across this photo while reading about terminal diseases. Medusa in the photo was hard to distinguish, as well as the disease from the body. The project is presented together with the Fumu's song Gelefish. I did not want the disease aspect to be dominant, or at least not the only one, I wanted the sun to be in it, as in the siblings for whom it was created. Sanfilippo does not exist in the air, but in specific people who live their short lives with all its aspects. By supporting the Sanfilippo Foundation you can help Adaś, Lea and other children suffering from MPS or a similar disease.