The Murphy Family
Hawaii Vacation * XP Family * Lila’s Island Adventure
Giving a family not just a vacation but the gift of memory, healing, joy, and being seen
For Lila and her family, a vacation is never simple. Lila lives with Xeroderma Pigmentosum (XP), Type D, an extremely rare genetic condition that prevents her body from repairing damage caused by ultraviolet (UV) light. Even a few minutes of exposure can result in severe burns, and everyday environments, from sunlight through windows to indoor lighting, pose constant risk.
“For Lila, it means that she cannot be exposed to any ultraviolet UV light, not only direct sunlight but also light passing through windows, or from indoor sources such as fluorescent and halogen bulbs,” her father Andrew shared. “Just five minutes in sunlight can cause her to suffer third-degree burns.”
In addition to extreme photosensitivity, Lila’s condition includes progressive neurological issues. While she is bright, joyful, and full of spirit, her family lives with the reality that time is precious. “The truth is, we don’t know how quickly her condition will progress,” they wrote. “What we do know is that we are determined to make the most of every precious moment we have.”
Despite these challenges, one dream had always risen above the rest.
“She has always loved the water,” her mother Miranda explained. “She has always dreamed of visiting the ocean…when we talk about it, her face lights up.”
When Shadow Jumpers asked Lila what her dream vacation would be, her answer was simple and immediate: “I want to see the ocean.” What followed was a carefully planned, fully supported trip to Hawaii, designed so Lila and her family could focus on living in the moment rather than worrying about logistics, UV exposure, or limitations.
From the start, the experience was intentional. “What Shadow Jumpers gave our family was not just a vacation,” Lila’s grandmother Leah wrote afterward. “It was a gift of memory, of healing, of joy, of being seen.” One of the first unforgettable moments came beneath the ocean’s surface. Lila explored the underwater world aboard a UV-safe submarine tour, descending more than 100 feet below sea level. “The most incredible part was that Lila was able to remove all of her protective gear while underwater because it was completely UV safe,” her family shared. “Watching her relax freely in that moment is something we will never forget.”
Soon after, Lila touched the ocean for the very first time. “At first, the moving water and shifting sand made her nervous,” they recalled, “but once she stepped in, she completely lit up.”
One of the most powerful moments of the trip came when Lila fulfilled her biggest wish: surfing in the Pacific Ocean. With individualized instruction and thoughtful preparation, Lila stood up on a surfboard and rode the waves on her own.
“Surfing was the number one thing that Lila wanted to do,” her mom wrote. “By the end of the two hours, Lila was surfing by herself, with her own rainbow shining in the background.”
The days that followed were filled with wonder. Lila swam beneath waterfalls in Waimea Valley, snorkeled in world-class reefs at Hanauma Bay, encountered sea turtles, vibrant fish, and marine life she had only dreamed of seeing. She capped off her week with a Luau.
As the sun set each evening, Lila experienced moments of freedom rarely possible in her daily life. “As the sun went down, she ceremoniously removed her sun protection gear and swam more freely than she ever has,”
Even quiet moments became memories, fireworks viewed from an ocean-facing balcony, shared meals, laughter, and togetherness.
As the week came to an end, the meaning of the experience became clear. “This trip was not just a vacation,” Grandma Leah reflected. “It was a lifelong memory. It was joy. It was wonder. It was hope. And it was time, given to us in the most beautiful way.”
Through experiences like Lila’s, Shadow Jumpers continues its mission to remove the burden of the sun so families can focus on what matters most: being together, creating meaningful memories, and living fully in the moments that matter. It will be hard to find another family more deserving of that than the Murphys.
Shadow Jumpers would like to give a special thank you and shout out to Hilton Hawaiian Village Waikiki Beach Resort, Atlantis Adventures Submarines, Ohana Surf Center, Waimea Valley, Hanauma Bay Snorkeling, Ko Olina Ocean Adventures and Waikiki Starlight Luau for their cooperation, planning and assistance in putting together this week long experience.
