Despite all of the physical abnormalities that Schwartz-Jampel Syndrome, or SJS, has presented 9-year-old Giovanni he refuses to let the condition define him.
Schwartz-Jampel Syndrome is a rare genetic disorder that causes abnormalities of the skeletal muscles, which presents itself as muscle weakness and stiffness, abnormal bone development, permanent bending or extension of joints in a fixed position, and/or growth delays like dwarfism. Schwartz-Jampel Syndrome may also cause small facial features and impaired vision.
There have been only 85 reported cases of Schwartz-Jampel Syndrome, according to the National Organization for Rare Disorders.
Giovanni was diagnosed with Schwartz Jampel Syndrome at age 2, and though the condition causes him physical pain, he still has a beautiful and infectiously sunny disposition.
“He has every reason to be angry with the world and he’s just not, he has this bubbly sunny personality,” Giovanni’s mother, Shannon Algarin, told WJAC. “The doctor explained to us that the condition was so incredibly rare, that we wouldn’t meet anyone with Schwartz-Jampel syndrome.”
Schwartz-Jampel Syndrome has caused the Pennsylvania boy’s joints to become permanently bent.
“You can tell he’s in pain pretty much all the time, he has a lot of medicine to help him cope,” Giovanni’s dad, Gion Algarin, said.
“Sometimes it hurts really badly and sometimes my mom gives me medicine,” Giovanni told WJAC.
The physical pain isn’t the worst of it for Giovanni. His parents said he’s had to endure bullying in school because of his condition.
“He can handle the physical pain a lot better than the emotional,” Gion said. “I think, the hardest part for him is being accepted by other people and being looked at as a normal child.”
So, Giovanni, who appeared on TLC’s “Two in a Million,” spends his time advocating for those with Schwartz-Jampel Syndrome.
He wants people to know that he likes doing things just like other kids do and that his condition does not define him.
He shared a video online holding up cards to spread his message.
“My name is Giovanni I have SJS. SJS makes my muscles sore but SJS is not who I am. I like cats and dogs. I like to paint. I want to be vet one day. There is so much more to me than Schwartz-Jampel Syndrome. Look at my smile and see. I am Giovanni, not SJS,” his cards say before he blows the camera a big kiss.
Watch his heartfelt message below:
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