Nine-year-old Giovanni Hamilton is a victim to one of the rarest diseases in the world but he won’t let it define him.
The rare condition is called Schwartz-Jampel syndrome (SJS) and it’s characterized by abnormalities of the skeletal muscles, including muscle weakness, development, and permanent bending of certain joints. To learn more, click here.
Giovanni released a bold video on the internet that has thus gone viral. In it, Giovanni sits on his wheelchair and holds up a series of signs, announcing that his syndrome does not define him. One such such card reads,
“SJS makes my muscles sore,” followed by, “But SJS is not who I am!”
In the note cards, Giovanni opened himself up to the world and showed us his personality. He loves dogs and cats, loves to paint, and wants to be a veterinarian when he grows up.
On posting the video, Giovanni said,
“Maybe if I do it this way, people will listen.”
He was diagnosed at the early age of 2 and has become used to taking six medications per day. Among the many surgeries he’s dealt with are hip and jaw reconstruction and he’s currently waiting for an upcoming eye surgery to avoid potential blindness.
Giovanni has an insatiable need to show that world his true colors and he refuses to succumb to negativity. At the end of the video, he shows us that proof with a bright smile, right before he blows us a kiss.
He’s also social media savvy, putting together several Facebook posts, tweets and Youtube videos. He posts several Youtube videos of him being active, goofing off in the pool with his siblings and putting on a magic show. When people respond to his posts, he tries his best comment back. He’s even garnered his own hashtag, #TeamGiovanni.
There are only 88 reported cases of SJS and the particular one that Giovanni has is so rare that it’s never been seen before.
After his therapy, he exercises, stretches, swims and rides his supped up medical bicycle. He’s not allowed to play sports, but he makes up for it with his activities.
His positivity and active engagement is rare for his age and there is a power in that positivity that has warded off bullies and attracted the likes of his favorite wrestler, John Cena, TLC’s special Two in a Million and the Make-a-Wish Foundation.
