SAN JOSE – 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 fist-bumps 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 agonizing second-degree-like burns on any uncovered areas of her skin.
Addison stays active in sports and even took part in a kid’s triathlon in Oregon four years ago when she was eight, 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 check-up next week.
“We’ve been told eventually she’s going to need a liver transplant, with bone marrow transplants,” Erica said. “Because the bone marrow transplant will ultimately cure that EPP.
“Without the bone marrow transplant, she will just go into liver failure again. We go every six months and just hope for the best that we’re staying in stable condition, and so this … you never know.”
Addison right now has an enlarged liver and spleen, so when she plays hockey, she wears extra padding to prevent getting hurt by a puck or falling to the ice. That’s on top of the four different medications she takes six times a day.
“I think that’s what keeps her going is the fact that, ‘hockey, I have to stay on my medication. I have to stay on my treatment program. I have to stay on all of this routine, so I can keep doing what I love,’” Erica Kypreos said. “So, she knows that and it’s very important in our day and our routine.”
Leppert and Shadow Jumpers renovated Addison’s room in Wisconsin to limit the amount of sunlight. Through that, Leppert found out that she was a huge Sharks fan.
After doing a bit of digging online, Leppert got connected to the Sharks Foundation. Shadow Jumpers flew the Kypreos family to San Jose, and the Sharks Foundation took care of most other details.
“We just were expecting a shout-out from a favorite player and maybe a puck,” Leppert said. “And to their credit, (the Sharks Foundation) sprung into action and the next thing you know, we’re flying out here and we’re skating with the team. In my wildest dreams when I sent that email, I couldn’t have imagined what we got from the Sharks.”
The joy on Addison’s face was evident Friday at Sharks Ice.
“I’m actually here,” said said. “That’s crazy to think about.”
She and her family watched the Sharks practice from one of the benches, and afterward, passed the puck around with Logan Couture, Tomas Hertl, and Kyle Burroughs. Well after practice ended, Sharks forwards Anthony Duclair and Justin Bailey remained on the ice with her, giving her tips on shooting and stickhandling. Duclair later gave the family a tour of the team’s practice facility.
Addison said her favorite part of Friday was, “Probably going on the ice with the players, shooting pucks, and them giving me tips.”
Duclair, Addison said, is her favorite Sharks player.
Addison, let ’em know who’s starting 👏 pic.twitter.com/uSiBSSYp2T
— San Jose Sharks (@SanJoseSharks) January 21, 2024
“When (the Sharks) came to me and told me her story, and told me that I was her favorite player, it kind of touched my heart,” Duclair said. “Any situation like that is tough to hear and you just want to do anything you can to help that person have a good day and have a smile on their face.
“Just her getting out there and meeting the guys and other guys. We played some games with her and stuff like that. It goes a long way.”
Saturday, Addison and the Kypreos family watched pregame warmups on the Sharks’ bench, read the starting lineup to the team right before the game, rode the Zamboni during the first intermission, and was interviewed by Sharks broadcaster Dan Rusanowsky in the press box during the second intermission.
“It’s amazing,” Erica Kypreos said. “For her to feel so welcomed I think by all of them is huge. She was so nervous about that, but it’s mind-blowing. I’m speechless.”
Addison has already experienced so much adversity and knows she has a tough road ahead. This is a weekend, though, that she and her family will not forget.
“The hardest thing is just thinking about it,” Addison said. “Then I keep pushing myself, I just keep going and I end up in a good place.”
