On Christmas Eve, Josiah Viera passed away at the age of 14, after a public, inspiring journey with the extremely rare disease progeria, which causes accelerated aging in children.
Josiah was something of a celebrity in the sports world, thanks to his love for baseball. He was even featured on ESPN’s E:60 series!
“Josiah left to play baseball with Jesus today,” the family’s message on Twitter said. “Our hearts are broken.”
While those who knew him mourn the loss go such a bright light, we also want to celebrate the lasting impact he made in the rare disease community.
What is Progeria?
Progeria, or Hutchinson-Gilford progeria syndrome, is an extremely rare, fatal genetic childhood disease with features that resemble premature aging. Affected children usually look normal at birth and in early infancy, but then fail to thrive and start to show signs of old age.
The first sign of progeria is when children fail to thrive and develop a localized scleroderma-like skin condition, and this is followed by a series of physical abnormalities that begin to surface. Children with progeria have prominent eyes, a thin nose, thing lips, a small chin, and protruding ears. In addition, progeria also causes hair loss, aged-looking skin, joint abnormalities, and fat loss.
Further into childhood, the signs and symptoms of progeria become more noticeable, and children with progeria experience hardening of the arteries, which can lead to all kinds of severe heart problems.
The chance of being born with progeria is about 1 in 4 million, making it among the rarest diseases in the world.
A big baseball fan, Josiah connected with the State College Spikes, a minor league baseball team based in State College, Pennsylvania and an affiliate of the St. Louis Cardinals.
According to ESPN, Josiah was became the Spikes’ honorary bench coach. He brought luck; the Spikes improved each year and a couple of seasons later, won the championship!
“I believe to this day that he’s the reason why our team won the league championship,” said Jason Dambach, Spikes senior vice president and general manager. “Being able to be around him every day at the ballpark was an honor and something I will cherish forever.”
Many members of the Cardinals, past and present, formed a relationship with Josiah throughout his life. He was often invited to the team’s spring training facility and spent time at Busch Stadium.
Former Cardinal pitcher Mitch Harris reacted to the news on Instagram:
“Though his time on Earth may have been short, his impact on many will last a lifetime.”