Whenever the opening notes of Bluey’s “Dance Mode” song fill the hospital room, 18-month-old Luis Alvarez Rivas begins to move almost immediately.
Despite being hospitalized for more than 100 days, Luis still lights up when he hears the upbeat rhythm. The nurses know it, too. They’ll put it on and dance with him, bringing moments of joy to days that can otherwise feel overwhelming.
Each night, after another long day at the hospital, Luis’ parents return to Ronald McDonald House® Central and Northern Arizona. The House has provided a place to stay, home-cooked meals and a community of families who understand what it’s like to wait through long, uncertain days while a child fights for their life.
“His personality of that cheerful, happy, cool dude shines through – even given everything he’s gone through,” his mom, Annelisse Rivas, said.
For most of his first year, Luis appeared to be a healthy child. But as he approached his first birthday, his parents began noticing developmental delays and other concerns. They sought multiple medical opinions, searching for answers.
Then, in January, everything changed.
Luis went from being a happy, playful toddler to sleeping nearly all day, refusing food and losing interest in the activities he loved. After he began vomiting and his condition rapidly deteriorated, his parents rushed him to an emergency room in Tucson.
There, doctors discovered his heart was enlarged and failing.
Luis would need specialized care available in Phoenix. But because he required ECMO life support, transferring him to Phoenix was a complex process requiring a highly specialized transport team. His case became one of the first long-distance pediatric ECMO transports of its kind in Arizona.
For Luis’ parents, the days that followed were a blur.
“We didn’t sleep from Sunday morning to Tuesday night,” Annelisse recalled.
At first, the family stayed in a hotel, believing they would be home within a week. Eventually, genetic testing revealed Luis had Barth syndrome, a rare genetic disorder that can affect the heart and muscles. Now, he is supported by a mechanical heart device as he waits for a transplant.
When doctors said he would likely need to be in the hospital for at least a year, a social worker connected the family with Ronald McDonald House.
“We don’t have to worry about food, we don’t have to worry about housing, we don’t have to worry about anything besides Luis,” Annelisse said. “Ronald McDonald House and the hospital made a very hard situation easier for us.”
The Cambridge House Ronald McDonald House location at Phoenix Children’s Hospital – Thomas Campus has been especially convenient during medical emergencies. More than once, Luis’ parents have received urgent calls from hospital staff in the middle of the night and were able to be at his bedside within minutes.
Beyond meeting their basic needs, the House has provided something else: community.
“It’s like coming home,” says Luis’s dad Jose. “You come home and talk with your neighbors and create this community. It’s just been amazing.”
Staff at the House have become part of that support system as well, greeting the family with smiles after difficult days at the hospital and helping make a challenging journey a little easier to bear.
“I’m beyond grateful for Ronald McDonald House and the staff here,” Annelisse said. “They have seen us on our hard days and on our good days and they still manage to make us smile.”
For now, Luis’ journey continues one day at a time. Through every procedure, setback and milestone, he remains who he has always been, a little boy who loves balloons, dinosaurs, Bluey and, especially, dancing to his favorite song.
“He truly is our little blessing, because he really just made our lives so much better,” Annelisse said. “Even given what we’re going through, I can’t imagine our life without him.”
