At 10 years old, Bill Chu of Amherst is much like any typical boy his age. He loves to play video games and ride his bike. He likes to swim, and he enjoys math.
But there is a cloud hanging over everything the fourth-grader does.
His kidneys are failing and he needs an organ transplant as soon as possible.
“He is suffering,” said his father, Tu Chu.
When Chu, a Vietnamese immigrant, first heard his son’s diagnosis, last spring, he says he felt hopeless, like his family had been robbed of the life that they love.
“All is upside down. I feel like in hell,” he said.
Bill was born with a bladder obstruction that left him with low-functioning kidneys. But he had been living a normal, active life until doctors discovered in April that he had developed an unrelated autoimmune disease, IgA nephropathy, which destroyed his kidneys’ ability to filter waste from his blood. Now, his family is frantically searching for an organ donor while he prepares for dialysis — the process in which a machine does the blood cleansing work his kidneys can’t do.
Bill also has been placed on a national list of patients needing kidney transplants.
“It is a really sad situation,” said Gregory Braden, chief doctor at Baystate’s Nephrology Division in Springfield. “We treated him and it didn’t get better.”
Though typically doctors look to a child’s family first for a living donor when a kidney is needed, that path, so far, has proven frustrating for Bill. His father, a facilities worker at the University of Massachusetts, is being treated for leukemia and, so, cannot give one of his. His mother, Han Chu, who lost a leg in an accident years ago, has a blood type that doesn’t match. Two of Bill’s three older siblings cannot donate for various reasons; one brother, Thach Chu, 27, a doctoral student at Dartmouth University, is getting tested now.
Even though Tu Chu lived through the Vietnam War and dealt with poverty and starvation before moving here in the 1990s, he said witnessing his son’s struggles has been especially hard: “I always stand and survive. However, this time, I feel weak…”
During a recent interview with the Chu family in the living room of their home, Bill clamped his big headphones over his ears and focused on playing computer games while his parents and an interpreter discussed his illness.
“Sometimes, he needs to urinate, but he can’t,” said Han Chu. “He feels he is sick. It hurts.”
As Bill and his family begin traveling to Boston three times a week for the dialysis treatments, friends and neighbors are accompanying them to doctors’ appointments, helping them seek a live donor and raising money to defray expenses.
“If there is a silver lining to this difficult situation, it is the tremendous outpouring of support from the community,” said Karen Harrington, one of the Chus’ neighbors.
Recommended to the family by the Boston Children’s Hospital, the Children’s Organ Transplant Association (COTA), based in Indiana, has helped the family determine that they need $50,000 to pay for transplant-related costs that will exceed insurance coverage.
Neighbors, the Amherst schools, the Survival Center and even the Asian student fraternity and sorority at UMass have pitched in and collected more than $15,000 already, said Harrington.
Kidney failure is not uncommon. The reasons may vary, but the condition affects thousands of people every year. Those afflicted are often forced to undergo years of dialysis before a donor match is made. Right now, there are more than 93,000 people nationally who are waiting for new kidneys, according to LivingKidney Donor Network, an organization working to educate the public on the need for living donors.
Many organ donations come from cadavers, but living parents and siblings are often the best match. But all living donors must be in good health and willing to undergo surgery, not every child who needs a kidney gets one, at least not right away. And the longer someone stays on dialysis, the higher the chances of their new kidney failing, too, says Braden.
Just one town over, Mackenzie Brown, 23, is an example of a patient lucky to have a parent able to help save her life. Brown and her mother, Deborah Felix, are recovering from the kidney transplant surgery that took place just a few weeks ago.
Like Bill Chu, Brown had had life-long low kidney function, but for different reasons.
At just six days old, her skin turned cold and blue as her kidneys shut down.
A 10-pound baby, who otherwise would have been healthy, she spent the first 2½ months of life in a neonatal intensive care unit. Bacteria called Group B Strep from her mother’s placenta had traveled into her urethra, up her urinary tract and into her kidneys leaving her with permanent kidney damage. Doctors told her parents, Thomas Brown and Felix, that it was just a matter of time before she would need a transplant.
After Brown lived with one quarter of an average person’s kidney function for more than two decades, the day finally came last spring. Her kidneys’ ability to filter her blood had dropped to an all-time low and she was told she had to get a transplant immediately, or go on dialysis.
Felix, a teacher at Fort River Elementary School in Amherst, was ready to help her daughter.
“It was always something we knew we needed to fix,” she said.
Brown had recently landed a position as a teacher in Baltimore and was hesitant to leave her job for two months for the surgery and recovery.
“I was nervous,” she said.
But almost immediately after her mother’s kidney began functioning in Brown’s body, tests showed kidney function at an almost normal level.
According to the American Transplant Foundation, the risks for kidney donors are low, but like any major surgery, there is the possibility of complications like infection or blood clot.
Long-term risks include high blood pressure or kidney failure, but since there has been no national systematic long-term data collected, the odds of this happening are unknown, according to the American Transplant Foundation.
Bill Chu’s doctor, Gregory Braden, said these complications are thought to be unlikely for most of the population, but the level of risk for kidney donors is still a controversial topic in the medical community.
“We are still trying to quantify that risk,” he said.
Brown is feeling a little sore in the aftermath of the surgery, but is making a swift recovery. “I don’t feel any different,” she said.
Felix also has been sore, and it has been difficult for her to bend over. She is taking a few more weeks to recover but she is grateful for the outcome.
“We are lucky. We are really lucky,” she said.
Bill Chu, whose face is swollen from his medications, just had surgery at Children’s Hospital in Boston to insert a port into his chest for his dialysis treatments. Each session takes about four hours.
“Bill is doing well after surgery,” his father said. “But we should be aware, this is only the beginning of his long journey.”
While he says he isn’t in much discomfort, Bill, a student at Wildwood School in Amherst, has missed a lot of school because of doctors’ visits. The frequent trips to Boston will mean even more missed school days and force Tu Chu to take time off from work, too.
Missing friends and school time has been hardest on his son, Chu said. “That hurt him the most,” he said.
An Chu, 21, a student at Princeton University in New Jersey and the wrong blood type to be a donor for his younger brother, has had to watch his family struggle from afar.
“It is hard for them to deal with it,” he said in a telephone interview. “They are trying to take things as they come.”
Since the success rate is higher with living donors, Bill Chu’s family hopes that someone from the community will step forward. In the best-case scenario, Bill’s brother Thach will be a match.
Because he is a child with kidney failure, Bill is eligible to have the transplant covered by Medicare but there will be other costs the family will have to bear.
“The insurance covers many of the medical expenses, but there is a huge gap,” said Lynne Weintraub, another neighbor who is advocating for the family.
The many trips back and forth to Boston, sometimes including overnight hotel stays, will be a financial burden, and then there will be health-related expenses as Bill gets older, Weintraub said.
“Even the smallest donation would help the family feel supported,” she said.
To donate money or learn about how to contact the family to consider a kidney donation, visit http://bit.ly/2dRPJS3.
Lisa Spear can be reached at lspear@gazettenet.com.