Special time for ailing Sharks fan
Erica Kypreos stood a few feet away, still a bit amazed at what she was seeing. On the ice was her daughter, Addison, smiling through her face shield as she passed the puck around and exchanged high-fives with a few San Jose Sharks players.
“I'm trying not to cry,” Kypreos said Friday, “so I can watch the whole thing.”
Hockey has always been a part of the Kypreos family, originally from the Livermore/Pleasanton area, and Addison, 12, grew up a huge fan of the Sharks.
The sport has become an even bigger part of their lives now. When Addison was 3, she was diagnosed with Erythropoietic Protoporphyria, or EPP, an inherited disorder that results in the accumulation of protoporphyrin in red blood cells, causing acute, painful photosensitivity in the skin. Even just a few minutes of exposure to UV light can potentially lead to painful second-degree-like burns on any uncovered areas of her skin.
Addison stays active in sports and even took part in a kids' triathlon in Oregon four years ago when she was 8, wearing a special outfit to protect her skin from the sun. The Kypreos family now lives in Wisconsin, and Addison plays center on her hockey team.
“Hockey's inside, there's no sun here,” said Craig Leppert, chairman and founder of Shadow
Jumpers, a Los Angeles-based non-profit that provides meaningful experiences to families suffering from sun-related diseases and disorders. “So, this is like a safe place, a sanctuary.”
Liver disease can be a dangerous side effect of EPP and in 2022, the Kypreos family learned that Addison was diagnosed with Stage 5 liver failure. When the body of an individual who has EPP breaks down protoporphyrin, it stays in the liver, starts to build up, and then crystallizes in that stage.
Erica Kypreos said Addison has a checkup next week.
“We've been told eventually she's going to need a liver transplant, with bone marrow trans