Meet Giovanni Algarin, a 9-year-old boy who lives each day with a rare genetic condition called Schwartz Jampel Syndrome. Despite the complexities that come with managing his painful condition, Giovanni boasts a cheerful disposition, letting the world know that first and foremost, he’s just a kid.
As of 2016, Giovanni has had eight surgeries in his young life. The most recent was a delicate surgery to reconstruct his right hip and give him a chance at walking.
Living with skeletal dysplasia, as in Giovanni’s case, is very painful. Giovanni is constantly battling stiff muscles, lives with malformed bones and joints that aren’t growing properly, and struggles to walk due to his hip joint dislocation.
The Algarin family celebrates each milestone that Giovanni reaches: a cheerful moment in the midst of many, many difficult days. The physical pain doesn’t go away, but Giovanni remains positive and fearless nonetheless.
“He has every reason to be angry with the world,” said Giovanni’s mother, “and he’s just not, he has this bubbly, sunny personality.” Still, sometimes Giovanni wishes people could look past his physical appearance and see the sunny little boy on the inside.
It was a miracle that Giovanni was able to meet another boy who is also living with Schwartz Jampel Syndrome. Thanks to a television show titled “Two in a Million” by TLC, the two extraordinary boys were brought together.
Owen Howkins, who lives in London, and Giovanni made their television debut when they co-starred in “Two in a Million.” The show features people living with rare genetic conditions, and the meeting provided both boys with a kindred spirit they desperately needed.
“Having both of them interact with one another like normal kids because he knows he’s different but to see somebody else like him, it was indescribable,” said Gion.
The Algarin family works to educate people about Schwartz Jampel Syndrome on social media. If little Giovanni’s triumph has touched your heart, consider helping his family raise awareness and support by sharing this story!