Filippo is 5 years old. And a few months ago he discovered he had one ultra rare disease. Today in Piazza Martinez in the San Fruttuoso district in Genoa, the parents met their friends who are there.. The teachers of the La Rondine kindergarten that Filippo attended wrote a story and some pictures and sent us during the lockdown. The current teachers of the Recco school have put them together in a booklet that is now used to raise funds for research.

“Fillippo has an ultra rare genetic disease, perhaps 30 cases in the world, you are in Italy – explains Laura Gabba, the mother – A disease that affects the bones of the wrists and ankles disappear and other causes of limitation begin. This disease of grasping things, of squeezing and walking. We went online as soon as we discovered it, there was nothing but some incomprehensible literature. We have decided to make a site www.lemanidifilippo.org where to put all that was our privacy, in one year we came to know 12 other cases in the world. This is also a way to try to move something “.

“We made a chain, union with other families struggling with this disease – explains the father – So we managed to create an association thanks to the Gaslini and the Lausanne clinic. The first goal is that now those who are looking for the name of the disease now he finds something, a face, of his parents. And now the research has started, dedicating us body and soul together with a fault in Milan. We have examples of children who have returned to walk, others who are working on a job. We hope and truly believe that Filippo can do it and be happy“.

For all information on the association www.aimtco.it