Reece Milavickas is in his own little world. The happy 3-year-old motors about in a sun-filled playroom at his family’s Daniel Island home, moving tiny emergency vehicles to and from. He’s on a make-believe rescue mission – and he is using his fleet of toy ambulances, police cars, fire trucks and helicopters to save the day.
“Muster!” says his mom, Paige Milavickas, using one of Reece’s favorite phrases. And the little boy directs his imaginary forces into action.
“I’m coming to save you!” he shouts excitedly.
But fun days like this haven’t always been the norm for this sweet and easy going toddler. Just a few months ago, Reece was at the center of a lifesaving mission himself – and this one was very real.
On June 27, he received a new liver after undergoing transplant surgery at the Medical University of South Carolina. Reece, who suffers from Alagille syndrome, a rare genetic disorder, has responded well to the surgery. And many of the grueling symptoms he has experienced since he was a baby have been alleviated. But to appreciate where Reece is now, one has to go back to when his journey began.
“We didn’t know anything was wrong at birth,” Paige said. “But he was having a hard time gaining weight. And then at about 5 weeks (old), we noticed he had become jaundiced.”
The troubling symptom prompted Paige and her husband, Chris, who were living in California at the time, to seek the advice of medical experts. Ultimately, a biopsy confirmed Reece had Alagille syndrome, a condition that affects about one in 30,000-45,000 individuals in the general population.
“It’s like a multi-system disease that affects every kid differently,” Paige explained. “For him… it affects his liver, kidneys and skeletal. It can also impact the heart and vascular system, the eyes, and more.”
For Reece, the liver disease was “pretty severe,” Paige added.
“For the first couple of years, you just manage it through a lot of meds, and through extra nutrition and vitamins,” Paige continued. “… He was taking in a good amount of food, but just couldn’t gain weight.”
The condition can cause blockage of the flow of bile from the liver, leading to issues with the body’s ability to absorb fats and vitamins. The buildup of bile acids can also lead to severe, debilitating itching.
“It’s like an internal itch that’s just awful,” Paige said. “That probably started when he was three months old…He never slept through the night until he was like 2 and a half years old.”
Reece would go on to develop painful xanthomas on his skin – which caused even more discomfort. But since he was still very young, they hoped to be able to manage things with medication – knowing a liver transplant might one day be necessary.
In 2019, the family, which includes 7-year-old twins Reagan and Ryland, moved from California to Virginia. There, Reece began a new medication treatment for Alagille patients that had good results in clinical trials with alleviating itching and reducing the need for transplant.
In 2021, Chris, an instructor pilot, found a new position at the Charleston Air Force Base, so the family relocated to Daniel Island and connected with the MUSC Transplant Clinic. Reece continued on the medication, and while his symptoms did improve, he was still itching and struggling with feeding.
Last December, Reece went through a transplant evaluation and was approved in January. But since he wasn’t in liver failure, Paige and Chris decided perhaps they could postpone until spring, when he was a bit older.
“And then in the meantime, all these things happened,” Paige recalled. “We found out he had more kidney involvement.”
He was also “barely eating,” she said, so his medical team recommended getting him a feeding tube so he could gain some weight and add hydration in preparation for surgery. They had planned to place him on the transplant list in April – but then, while walking across his room, he fractured his femur. Low bone density is yet another symptom associated with Alagille.
After recovering from his fracture, Reece officially made the transplant list in mid-June. They got a call on June 25 that a liver was ready and two days later Reece received his transplant.
“It happened really fast,” Paige said. “It was totally wild.”
He stayed in the hospital for almost three weeks. Despite suffering from a severe bowel bleed during his recovery, the surgery was deemed a success.
“He’s made significant progress,” Paige noted.
But the best part about coming home, other than Reece’s promising bill of health, was the “hero’s” welcome he and the family received when they pulled onto their street in Center Park. Affectionately dubbed “Team Reece,” friends, neighbors and extended family members stood outside the Milavickas home holding signs and cheering as the family pulled into the driveway. A crew of firefighters from the Daniel Island Fire Station also took part.
“That day we got home, that was a surprise!” Paige said. “I was expecting maybe a few neighbors to be out…but it was so much more than I expected! It was awesome.”
Team Reece has been in action for quite some time in fact, well before the surgery, and in the weeks after, providing encouragement, support, meals, and helping with other needs. In addition, MUSC’s liver transplant coordinator, Kelsey Urtz, lives just around the corner from the Milavickas family.
“I just feel like this was just meant to be,” Paige said. “The support, this community, and this spot, this street! It’s been amazing.”
And while Reece has had to deal with a few health hiccups since leaving the hospital, he is doing much better. For his family and friends, who have all “mustered” on his behalf, it is a true mission of love that has left them both inspired and grateful.
“He’s always been happy,” Chris added. “He would be sitting there scratching, excessively, to where it was bleeding, and still be smiling… it’s definitely given us a larger perspective on everything. Just living day by day, and appreciating it.”
“He just brings a smile to everyone’s face,” said Paige, who calls Reece’s liver transplant scar his “super hero” mark. “… Just seeing how happy he is, despite all of the difficulties, is pretty incredible.”
To follow Reece’s health journey, visit the “Team Reece” Facebook page at bit.ly/3SpO60Y. Additional information about Alagille syndrome can be found at alagille.org.