Zainab Mughal, a 2-year-old girl from Miami, needs blood transfusions for her cancer treatment but she has a blood type so rare that so far only four donors worldwide have been identified.
In August, doctors determined Zainab had neuroblastoma, a cancer that develops from immature nerve cells and most commonly occurs in young children.
Frequent blood transfusions are required for Zainab’s treatment, but finding enough blood has been a challenge because she is missing the Indian-B antigen, a molecule found on the surface of most people’s red blood cells.
Only people of Indian, Iranian or Pakistani descent are likely to be missing the antigen. That means that to be a potential match, a donor’s birth parents must be of one of those ethnicities. Less than 4 percent of people in those ethnic groups are missing the antigen, according to OneBlood, the organization that helped Zainab’s family share their story publicly.
And because Zainab’s blood type is A-positive, the donor must also have either Type O or Type A blood.
So far, OneBlood has identified only four matches worldwide in collaboration with the American Rare Donor Program — the most recent was discovered in the United Kingdom — but because blood donors are limited to giving only once every 56 days, Zainab needs three to six more donors, Susan Forbes, a OneBlood spokeswoman, said.
Zainab has been receiving chemotherapy for months, and so far her tumor is shrinking. Next she needs surgery to remove the tumor, which would be followed by two bone marrow transplants.
“The doctor said that for every bone marrow transplant, she’s going to need two to three units” of blood, Raheel Mughal, Zainab’s father, said in a video interview recorded for OneBlood. “And that’s not how much blood is available.”
After OneBlood made a public plea for donors in early December, there has been a huge response: The organization has received about 22,000 emails in the last 30 days and has so far tested more than 2,200 units of blood at its lab, which has been operating around the clock, Ms. Forbes said. None was a match, she said.
Zainab’s parents estimated that their daughter’s illness began more than 10 months ago when they noticed that her temperament changed and her appetite waned. She developed fevers and constipation, and she wasn’t urinating normally.
Zainab was once an active, chubby child, but she lost weight and preferred to be on the bed instead of running around. Her condition seemed to worsen over the summer. The family recalled visiting relatives in Atlanta and attending a barbecue where Zainab was quiet and withdrawn.
“Everybody wanted to play with her,” Mr. Mughal said. “So there were a lot of other kids there. But she would not play with anybody. My wife kept telling me, she said, ‘She is not O.K. She is not O.K.’”
They brought Zainab to the pediatrician.
“I went to the doctor and I said to her over and over, ‘She is not eating,’” Zainab’s mother, Mariam Mehmood, recalled during the interview.
When they learned that Zainab had cancer, it was “devastating,” Mr. Mughal said. “At that time we were completely destroyed.”
Zainab had a tumor growing in her stomach, Mr. Mughal said, and a biopsy revealed that it was cancer. Doctors have characterized Zainab’s neuroblastoma as high risk. Children in that category have a five-year survival rate of around 40 to 50 percent, according to the American Cancer Society.
Soon after Zainab received her first blood transfusion, doctors realized that she was missing the Indian-B antigen, meaning that if her body receives blood that does have the antigen, her immune system will attack it.
The presence or absence of antigens is what creates the eight most common blood types: A+, A-, B+, B-, O+, O-, AB+ and AB-. Those with Type A blood, for example, have Type A antigens and will produce antibodies to fight Type B blood. According to the Red Cross, there are more than 600 other known antigens and they create rare blood types, like the kind Zainab has.
Next month Zainab will be 3 years old. Despite having had multiple chemotherapy treatments, she has remained resilient, her parents said.
“The moment you remove the dressing from the port and you remove the needle — immediately after it, she becomes a totally different person. She forgets what happened to her,” Mr. Mughal said.
The family is hopeful that she will recover with the right treatment. But first, she needs a larger supply of blood.
“We are just praying and hoping every day, every single second,” her mother said.