Little girl prepares for big fight

Messenger Post Staff

VICTOR — After several months of paperwork, waiting and wondering, a Victor family traveled to China’s Jiangxi province in late May to finally meet their new daughter.

Craig and Kelsey Bright named the 9-month-old girl — whom they dubbed their very own “Asian Gerber baby” — Isabelle Bai Bright. The baby immediately took to her new mother and seemed delighted to meet her new, older sister, 9-year-old Anna.

Isabelle was issued a passport and a visa and, despite a fever and diarrhea, was found to have no parasites, bacteria or viruses that could prevent her from leaving for the United States with her new family.

Within days of arriving home, however, the cherubic infant’s smile disappeared. Her fever and diarrhea worsened, and red spots appeared on her belly, which began to swell. She was admitted to Golisano Children’s Hospital at Strong, where doctors became concerned about her liver and spleen.

Watching their new daughter get sicker and sicker was heartbreaking, Kelsey Bright said, and on June 20 the family got the diagnosis: a rare and potentially fatal blood disease called hemophagocytic lymphohistiocytosis (HLH).

“At least now,” the Victor woman said, “we know what we’re fighting.”

Eight weeks of treatment began immediately after the diagnosis, and included a form of chemotherapy and an anti-inflammatory steroid. The baby has also undergone biopsies, lumbar punctures and CT scans.

While hoping for the best, the Brights were told that if their daughter turned out to have the genetic form of HLH, the treatment would not cure her and her only hope would be a bone marrow transplant.

That’s what they’re preparing for now.

While Isabelle’s smile slowly returned as she responded to therapy, she came down with a fever Aug. 23 and was admitted to Strong, with low blood counts and other indicators that the HLH was still active. She missed her first birthday party, which neighbors on Citation Way had been eagerly preparing for, but returned home from the hospital last Sunday evening.

As her older sister and friends raced around the house this past week, she reached out to them. For now, however, the friends can’t come too close.

“She doesn’t really have any germ-fighting ability,” Bright said of the baby, who this summer began mimicking the motions of the family’s frequent hand washings.

After searches of bone marrow registries in both the United States and China, doctors believe they have a donor. All the family knows is that she is a 27-year-old Asian woman. “She’s providing a second chance to a little baby and the baby’s family. I get chills thinking about it,” Bright said.

A bone marrow transplant is not without risks, however. Infection and organ failure are both possibilities.

“It’s been very difficult to come to grips with,” Bright said.

Through it all, she added, maternal grandmother Sheila Maynard of Brockport has kept the household running and Anna has been a trouper, helping with everything from administering medicine to changing the dressing on Isabelle’s IV.

When she starts fourth grade this Thursday, Anna will sport a new, shorter haircut after donating to Locks of Love so that other children undergoing chemotherapy can have hairpieces. A friend in the neighborhood did the same thing, Kelsey Bright noted, “in a show of solidarity for Isabelle.”

Although the family just moved to Citation Way two years ago from Bethesda, Md., Bright said everyone has been “overwhelmingly generous,” bringing over meals and sending a basket of goodies to the hospital, for example.

Neighbor Nora Lee Bailey said the Brights are selfless people whose strength and determination to not let Anna get lost in the shuffle are nothing short of awe-inspiring. She is among many people praying for Isabelle.

“She’s just going to battle this and be a winner,” she said.

Being a fighter runs in the family. Anna was born three months before her due date, weighing 1 pound 5 ounces. She spent the first four months of her life in a neonatal intensive care unit and is featured in a book about premature babies called “Living Miracles.”

Because Anna was saved, in part, by donated blood, the family urges those who ask how to get on the national bone marrow registry to also donate blood. Just last week, Bright said, Isabelle received two transfusions.

Bright said the family is taking heart in the knowledge that Isabelle is fortunate to be in the United States. Her disease — which happens in about one in 1 million people — is so rare that it’s perplexing even to physicians who have experience with it.

“If she had gotten sicker earlier, she would not have been cleared to come to the U.S. and she would have died,” Bright said. “The timing of it was amazing.”

As it turns out, Isabelle was originally named Fu Baijie. In Chinese, Fu means “lucky.”