3/01/2012

The Mattia Fagnoni Association


Some months ago someone sended me a message if i would like to give him some artworks for his foundation, this person was Francesco Fagnoni. With some searching on the net and some messages to other persons, i found out that this project was for real and even some people told be that these persons behind this wonderfull project were great people. This made me decide to send some of my artwork to them for. Let's  introduce the persons behind the project and meet Mattia.

We are Francesco and Simona and we live in Naples (Italy) and we are the proud parents of Mattia and Nicolò. Unfortunately Mattia was born with the
“Sandhoff Syndrome” a genetic, degenerative and lethal disease. For this reason we have created the “Mattia Fagnoni Association, in order to raise funds for finding a cure for this disease. We are also providing support for the families who are hitten by this desease. We are raising funds with art-auctions.

Mattia is the only one in Italy, who is suffering this Sandhoff Syndrome. It was very hard for us to gain practical advices and to find some help from other people, who dealt with this disease. Luckily we have met many families around the world and they have helped us with giving useful advices. Their presence, even from far has been extremely important for us in difficult moments.

The Sandhoff Syndrome is a metabolic illness. Children who are facing this disease are subject to the absence of the main enzymes that facilitate the release of toxins,
produced by brain cell. Cells gradually become sick and they create
imbalances in the child that become increasingly severe. In the first
8 / 9 months of age, the child will not show any problem. From 10 months the first signs of this disease are starting to show. Sandhoff Syndrome is difficult to
diagnose, because only one case in a million suffers from this illness
and you can identify it only by a prenatal genetic diagnosis.

We started to notice something when Mattia was in his 6th months of life,
because he was unable to crawl and sit up. He could not do all basic steps in the stages of development. Since then our ordeal began, his vision became worser and it made Mattia almost blind. Now Mattia is 4,5 years of age. He is not able to move and the only senses that are working are his hearing and he can touch.

Since doctors have diagnosed the disease, after many suppositions of
other illnesses, we are fighting against something bigger than us. Our struggle is not only against this disease, but also against the bureaucracy. Since it is not easy to assert our rights and to receive the right support for them.

We turned pain and discomfort into strength and stubbornness. This is
what we want to convey for the ones, who are living in the same situation as us. Even in 2012, disabled person are not respected and they should be. With our artistic past and a previous experience in public relations, we decided to exploit our capacity to bind and unite artists (and everyone, who can help us!) in one big group. All available resource are extremely welcome!

The ultimate goal is a financial support for the research, with this we hope to find a
cure for the Sandhoff Syndrome. Probably Mattia will not live long, but we hope that a cure will be found for the other children who are and will be born with these disease.

The artworks that already have been raised are amazing, an enormous collection of artists already gaved some artworks but this is not enough.....they need more for their goal. It is great to see that the artist community is willing to give a hand to this project. Especially when you see, that many artists are facing financial problem due to economical changes, even than they are willing to participate.


If you are an artist and willing to give some art to this wonderfull foundation contact them through this Facebook page:


I will show you guys a collection of some art that has been submitted in the last month.







For taking some more information about the Sandhoff Syndrome visit: www.ntsad.org 

1 comment: