I was contacted via Facebook asking me to share with our readers a sad story about a child called Mattia Fagnoni, from Italy who has recently passed away....Mattia was born with “Sandhoff Syndrome”, a genetic, degenerative and lethal disease. His parents have created the “Mattia Fagnoni Association”, in order to raise funds for finding a cure for this disease and providing support for the ones who need it. Mattia was the only child in Italy to have suffered from Sandhoff Syndrome; so it was all the more difficult for his parents because they were alone and found it hard to get practical advice and to find some help from someone who knew about this disease and how to treat it. Sandhoff Syndrome is difficult to diagnose because only one case in a million suffer from this illness, and you can identify it only by a Pre-natal genetic diagnosis. They started to notice something when Mattia was in his 6th month, because he was unable to crawl and sit up, all basic steps in the stages of development.
Since then, worsening of vision made Mattia almost blind. By 27th months old, his condition worsened day by day: he was not able to move, and was left with only his touch and hearing senses functioning properly. Soon after, Mattia sadly passed away, but his parents have continued the fight against the illness. They are planning to hold another art show in Naples, Italy on the 26th April to the 8th May and are looking for submissions. All sales income will go directly to the “Mattia Fagnoni Association”....
If you would liek to take part and help the Fagnoni family out (like these artists above did), then please get in touch on
Facebook....
To find out more information about Sandhoff Syndrome you should visit the site
www.ntsad.org.
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