LAS VEGAS (FOX5) — A Golden Knights fan from Boise has been staying at the Ronald McDonald House while their newborn baby fights in the NICU, and despite this difficult time, the family got a chance to step away from the hospital for their second night of the series thanks to the help of some fans of the opposing team.
The baby girl was born 27 days ago in Utah, and doctors quickly diagnosed her with a rare condition.
“She’s got an ARID 1B genetic mutation and a Coffin-Serris syndrome diagnosis,” her parent Brian White. “There’s about 350, maybe up to 1,000 people in the world that have it. So, it’s extremely rare.”
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She has been in the NICU, and her family said even the medical team is learning with them.
“None of the medical staff that we’ve experienced here at University of Utah have ever had a patient with Coffin-Serris syndrome,” White said “So, it’s a unique situation for sure.”
Mammoth fans step in to help
The family said they have been Golden Knights fans for years. After staying at the Ronald McDonald House for the past month, they won free tickets through the program.
After a news story aired, a couple of Mammoth fans stepped in and bought them tickets so they could see game four.
“Their story really resonated with us because we’re parents of some special needs kids,” Melanie Castillo said, “We didn’t have to do the NICU thing. But it’s a whole other layer of heart when you have a kid with special needs. And so being able to help these guys out means a lot.”
Kata’s parents said the support has helped them feel a little less alone and given them a much-needed break from the NICU.
“It did feel very lonely,” White said. “It felt very scary with the baby and stuff. And then over the last few days, it’s just been crazy. The overwhelming support that we’ve gotten from, especially from Mammoth fans, has been second to none. And we get to go see our favorite boys play.”
White said she has surgery on May 4 to get a tube placed, which would allow them to return home.
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