Wish of 12-year-old girl living with rare disorder granted by San Jose Sharks: Meet Addison Kypreos
"Probably one of the best days ever."
SAN JOSE, Calif. (KGO) -- A wish came true Friday for a 12-year-old girl, living with a rare disorder that's had big impacts on her life.
She's a huge San Jose Sharks fan, and the team helped her live out her dream.
"I've loved this," said Addison Kypreos,"Probably one of the best days ever."
Though Addison and her family now live in Wisconsin, their roots are in Northern California.
Addison is not just a Sharks fan, but possibly one of their biggest.
She got the surreal opportunity to join them on the ice at their practice rink.
"I got to do face offs, and I got to learn new tricks," she said of her time with the players.
MORE: Stanford 'miracle' patient ready to honor his 3 organ donors while riding 2024 Rose Parade float
Despite Addison's energy and enthusiasm, she's been dealing with a devastating disorder.
"Addison suffers from a rare sun disorder called EPP," said Craig Leppert, chairman and founder of the nonprofit Shadow Jumpers, "Basically, like a few minutes outside on the wrong day, can equal pain that's equal to a second degree like burn."
Addison's disorder also led to stage 5 liver failure.
Shadow Jumpers helps families who are faced with rare sun disorders.
MORE: Child with cancer known as Batkid saved SF 10 years ago. Here's how Miles Scott is doing now
They got in touch with the Kypreos family as Addison was going through liver treatments.
"What we found was her bedroom, that she was relaxing in, got hit with sun all day," Leppert said, "So what we did is we renovated her basement to also act as a makeshift bedroom for her. But while we were doing that, we learned she was maybe the biggest Sharks fan we've ever met."
So Shadow Jumpers connected with the Sharks Foundation who planned a fun-filled two day event for Addison starting Friday.
"When we hear that there are young adults or youth out there dealing with chronic or critical illnesses but they're big Sharks fans and hockey brings them joy, we always want to step in and bridge that gap," said Jenn Johnson, senior manager with the Sharks Foundation.
Not only did Addison get to skate with the Sharks, she got a custom hockey stick cut for her, locker room tour and gets to see her first NHL game, just some of the excitement on her packed itinerary.
MORE: Girl with rare disease beats the odds to celebrate 5th birthday
One of the biggest things she's taking away from the thrilling two-day experience though is gratitude.
"Thank you," she said to all who made the visit possible, "I appreciate everything."
If you're on the ABC7 News app, click here to watch live
