A nine-year-old boy from Pennsylvania has shared a message about his rare genetic disorder in a touching video.
Giovanni Hamilton suffers from one of the rarest conditions in the world, Schwartz-Jampel syndrome, known as SJS.
In the video, Giovanni sits in his wheelchair holding up signs which explain there is more to him than his condition.
He displays one sign that says, ‘SJS makes my muscles sore’, and it’s followed by, ‘But SJS is not who I am!’
Giovanni let’s viewers know that he likes to paint, loves cats and dogs, and even wants to be a veterinarian one day. He told his mom he wanted to make the video because, ‘maybe if I do it this way, people will listen’.
Giovanni Hamilton posted a video to tell the world he is more than his condition
Giovanni, 9, has Schwartz-Jampel syndrome. The condition causes permanent muscle stiffness and weakness. But Giovanni wants everyone to know some other cool facts about him
SJS is a rare inherited disorder that causes permanent muscle stiffness and weakness. It’s also known as a type of dwarfism – keeping muscles tight and restricting them from growing normally
Giovanni was diagnosed with SJS at two years old and takes six medications for the pain every single day.
He’s undergone nine surgeries, including hip and jaw reconstruction surgery. He will undergo eye surgery next month to help the muscles in his eye and prevent any blindness.
But Giovanni said he wanted to make this particular video so people can see who he really is beyond the surgeries and metal of his wheelchair and walker.
He curates all of his Facebook posts, tweets and YouTube videos with his mom, Shannon. She said Giovanni is very active on all platforms and even enjoys commenting back to some of his viewers. They’ve started the hashtag #TeamGiovanni.
‘For being smaller than everyone, boy he’s got the voice and personality to make up for it’, she told Dailymail.com.
The soon-to-be fourth grader combats bullying with his positive attitude and contagious smile
The nine-year-old posts photos and videos to his Facebook, YouTube, and Twitter to raise awareness about disabilities
Giovanni curates his social media platforms with his mom, Shannon. They also do exercises at home together when Giovanni has the day off from physical therapy
Doctors told the family there are only 88 reported cases of Schwartz-Jampel syndrome in the world, and the type that Giovanni has, has never been seen before.
And the soon-to-be fourth grader clearly doesn’t let this disorder stop him. On his YouTube channel are videos of him performing a magic show in his school’s talent contest and playing in the pool with his two siblings.
His mom said he has surpassed doctor’s expectations. After getting his body cast off from his hip replacement surgery, Giovanni was up and about within four hours, taking at least 10 steps. And though he’s not permitted to play sports, he walks far more than he was projected to.
The nine-year-old goes to therapy twice a week and does exercises at home each day involving stretching, swimming, and a medical bicycle.
He posts videos just being himself to raise awareness of people with disabilities and show that he’s just like any other kid. His bright personality and positive attitude have combated bullies and even gotten the attention of TLC’s special Twice in a Million and his idol, wrestler John Cena, through the Make-a-Wish Foundation.
He hopes that his videos will make people realize that their words matter.
Giovanni has undergone nine surgeries, including a hip replacement. After four hours out of his body cast he was taking at least 10 steps
The middle child of three, Giovanni loves to play with his siblings
John Cena met Giovanni in 2015 and made his wish come true
Therapy for Giovanni includes swimming, stretching and exercising
‘For being smaller than everyone, boy he’s got the voice and personality to make up for it’, said Giovanni’s mom