Xander Barr’s family knew their son was in for a long health battle before he was even born. As his family shares on their website, “Xander the Brave” was diagnosed at just 27 weeks gestation with Beckwith-Wiedemann Syndrome — a rare genetic disorder that causes an abnormally large tongue, larger than average gestational size, and excessive amniotic fluid.
But perhaps the most devastating news Xander’s family had to hear was that Beckwith-Wiedemann Syndrome made it 600 times more likely that Xander would have childhood cancer.
At just 2 ½ months old, their worst nightmares became true: Lesions were found on Xander’s liver and he was diagnosed with Stage III Hepatoblastoma. After six round of chemotherapy and surgery to remove the growths, the cancer was gone.
But by the time Xander was a year old, the cancer had returned. Soon after, his family left their home state of Missouri to come to Cincinnati Children’s Hospital so that Xander could get on the liver transplant list, in the hopes that his life could be saved.
In March 2015, Xander received his first transplant. But it failed, and his mother Randee Barr tells Babble that this was when Xander went into end stage live disease. At one point, he was too sick to even be considered for another liver transplant.
But at that time — as Xander’s health was taking a turn for the very worse — a 2-year-old girl named Kinsley Kinner was being admitted to Cincinnati Children’s Hospital. According to WLWT5 News, Kinsley had been beaten by her mother’s boyfriend, and sadly died soon after being admitted to the hospital.
Meanwhile, Xander’s health was miraculously beginning to improve — at least long enough to get back on the donor list. Still, his family wasn’t sure if he would get a donor in time for his life to be saved.
“I was losing hope that we would find a liver before our ‘window’ would close,” Xander’s mom wrote on his Facebook page. “Each time a person would pass by our door I could feel my heart sink, hoping that someone was coming to deliver good news of a donor.”
But that good news came on December 5, 2016, when Xander’s family learned that Kinsley’s liver was a perfect match for Xander.
“[O]n Dec. 5, he received another life-saving blessing, and he received Kinsley’s liver,” Barr told WLWT5 News. “The next day, about noon, I got to see my little boy again.”
Barr calls the whole experience a “beautiful tragedy,” telling WLWT5 News, that as blessed as she is to get to have her son alive and healthy, she will never forget the little girl who lost her life to save Xander. “It just hurt so much worse that somebody had to lose their baby so I could have mine,” Barr shared.
Barr tells Babble that Xander, who just turned 3, continues to be in remission and in good health. He also has a new, special role: that of big brother — the Barr family recently welcomed another son, Liam, who is now 5 months old. And according to Barr, Xander absolutely loves being a big brother.
Xander’s mom urges anyone who has been moved by Xander and Kinsley’s story to donate to Xander’s page at the Children’s Organ Transplant Organization, and to consider becoming an organ donor.