A touching video has emerged from the United States of a young boy sharing a hopeful message about living with Schwartz-Jampel Syndrome (SJS).

In the clip, which was filmed in Pennsylvania, nine-year-old Giovanni holds up signs explaining that there is more to him than his rare condition.

"I like cats and dogs," one of the signs reads. "I want to be a vet one day," he writes on another.

And then little Giovanni signs off saying "I am Giovanni, not SJS" and blows a triumphant kiss for the camera.

Giovanni is a nine year old boy from Pennsylvania living with an incredibly rare condition called Schwartz-Jampel Syndrome. He spends a lot of time advocating for awareness but he also wants people to know that he is just kid who likes to do things all kids do! He has goals for when he is grown up. Giovanni's important message is that he has SJS but he is not SJS. He is Giovanni.