
‘Is this real?' How Disney makes wishes come true for critically ill kids
'I didn't picture my daughter going to the beach again, swimming again,' the Los Angeles mom said.
Her 6-year-old, Luciana, was diagnosed with a cancerous brain tumor, medulloblastoma, in January of last year.
'When something like that hits your life out of nowhere, the last thing you're thinking about is doing something like this,' Jamie said. 'We were just thinking about that specific moment and how to bring her out of that.'
Each day, families with critically ill children face hardships most people can't imagine, but Make-A-Wish can. For more than 40 years, the nonprofit has been granting their kids life-changing wishes through partners like Disney.
'They were the only ones thinking about the future,' Jamie said. 'They were able to picture that for us.'
Disney is Make-A-Wish's largest wish grantor, fulfilling more than 165,000 wishes since the first official wish for then 7-year-old Frank "Bopsy" Salazar at Disneyland in 1981. Most of those are park-related.
Disney Experiences Chairman D'Amaro serves on Make-A-Wish America's national board of directors and his niece is a Wish alum. At a Star Wars-themed Wish event at Disneyland last year, he told USA TODAY, 'We've been thinking about how can we continue to make these experiences even more immersive, even richer, even more memorable for these Make-A-Wish kids.'
This spring, Disney properties around the world did just that for scores of families like Luciana's during Disney Week of Wishes and Aulani Wish Week.
The royal treatment
Nearly 50 Wish families were treated to a two-day Once Upon a Wish Party at Walt Disney World in Florida.
Lilly Fernandez of Chester, New York, chose Disney World 'because I wanted to see the castle and the other Disney princesses. And I got crowned princess, so now I'm not just Lilly. I'm Princess Lilly!'
The 6-year-old has been battling Acute Lymphoblastic Leukemia since March of last year.
Her mom, Heydi, said Lilly takes her chemotherapy 'like a champ,' but it's been tough. 'We have some good days and some bad days."
The Disney days were good ones.
'It was so magical, and I was like, 'Is this real or am I like just asleep?'' Lilly said. 'I danced, and I was playing with Pluto. And I was pretending to be a squirrel, so he was chasing me.'
The kids were treated to a royal ball, a pajama party and other special surprises.
'Just seeing Lilly happy and just for that moment, it just felt like we were in a dream,' Heydi said. 'I'm sure that a lot of parents felt the same, where they saw their kids happy, being that they have gone through maybe months, maybe years of going through what they're going through with their health.'
Give Kids the World: This Florida resort gives critically ill children the chance to just be kids
A hard journey
A post shared by Make-A-Wish Oregon (@makeawishoregon)
'This journey, honestly, in day-to-day life, it is hard,' said Linda Pham of Beaverton, Oregon. 'My son can be fine right now. The next day he can be in the ER fighting for his life.'
Her 5-year-old Raiden has UBA5, which UMass Chan Medical School describes as an ultra-rare neurodegenerative disease.
'Think of cerebral palsy that can get worse over time and causes epilepsy, as well,' said Raiden's dad, Tommy. 'And his brain ... it's kind of like frozen in time. Maybe it's like a five, six-month-old.' Raiden also can't control his body and is non-speaking, but his dad says they're closer to getting gene therapy.
At home, Raiden's parents take turns caring for him around-the-clock, with help from their 7-year-old, Jordyn. Linda and Tommy also juggle full-time jobs and work on the Raiden Science Foundation, which they started to raise awareness and funds for rare disease research for kids.
'We never really have a moment together as a family, so this week has been incredible,' Tommy said.
They chose Aulani, A Disney Resort & Spa in Hawaii for Raiden's wish because he loves the water, and Linda said he giggles like a baby whenever anything Disney is on TV.
The Phams shared laughs and reconnected on the trip. They also connected with other Wish families.
'Having a family that understands and to be able to relate to when they're there, it just makes you part of a community, too,' Linda said.
Full of hope
Luciana's family knows the importance of community.
'That reminder that there's someone else looking after you, that you're not alone, that is huge,' Jamie said.
Make-A-Wish gave them something to look forward to, at Aulani.
"It brought us out of all that routine of going to the hospitals, going to every appointment,' Jamie said. 'Like you're able to picture again how your life was, but now with a different sense of view that's full of hope.'
What she didn't imagine was that Luciana would be done with cancer treatment and in remission by the trip.
'I go to the pool and dance, said hi to Moana and Stitch,' Luciana said. 'And then I went to a luau. I went to see the sunset.'
The pool was her favorite, but she called the whole experience exciting.
"That filled our hearts so much,' Jamie said.
Make-A-Wish America says 87% of alumni consider their wishes a turning point in their treatment and 99% of doctors say wishes help ease the family's traumatic stress.
Any child being treated for a critical illness may be referred to Make-A-Wish by their parents, legal guardians, family members with detailed knowledge of their current medical condition, medical professionals, social worker or child-life specialists.
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