LOS ANGELES - A 6-year-old boy has a lot to be thankful for this year. Children's Hospital Los Angeles shared a video on social media Monday of little Adriano, who goes by the nickname, "Nano," ringing the bell to mark his last treatment.
"The sound went straight to our hearts and filled our eyes with happy tears," the post reads.
"Thank you for taking care of me and always being here for me," Nano told the hospital staff after he rang the bell.
Nano was born with a rare genetic condition called Fanconi anemia, where mutations in certain genes slow the normal daily process of DNA repair in cells. According to hospital staff, this fragile DNA leads to bone marrow failure and other problems.
He was diagnosed with the condition when he was just 15-months old.
Some Fanconi anemia patients can live for years, even decades, before their bone marrow fails. But by the time Nano was four years old, his blood cell counts were dropping too low, and random bruises began popping up on his body.
"As Nano grew, his marrow function worsened, and it got to the point where he was going to need blood transfusions," explained Michael Pulsipher, MD, a hematologist and Head of Transplantation and Cellular Therapy in the Cancer and Blood Disease Institute at CHLA, and an expert in Fanconi anemia. "He really needed a bone marrow transplant."
Because of Fanconi anemia patients’ fragile DNA, bone marrow transplants are highly specialized.
Unfortunately, it was challenging to find Nano a suitable match. Nano’s best option was an umbilical cord blood transplant from one of several national registries that bank cord blood that’s donated after babies are born, hospital staff said.
"Cord blood is very rich in bone marrow stem cells," Dr. Pulsipher said. "It allows us to do a mismatched bone marrow transplant that we couldn’t otherwise do."
Although Nano's transplant went well, afterward, he developed graft-versus-host disease of the gut and skin, a common complication. He’s also suffered recurring bouts of pneumatosis, a painful condition where air gets in the lining of the intestinal walls.
Recently, Nano was back in the hospital with another bout of pneumatosis, which quickly cleared. After slowly building up his tolerance to food again, he is now back home and doing well.
"Long-term, our hope is that we’ll be able to completely wean Nano off his immune suppression medicines, so he can live a more normal life," Dr. Pulsipher says. "But we have to do that very slowly and carefully."
Until then, "We’ve just got to stay strong and stay standing," his mom said. "We’ve got to keep fighting."