Boy's death sparks minority campaign to help blood cancer patients
Chances are even slimmer for racial and ethnic minorities, because few have registered to be bone marrow donors.
The recent death of a Naperville teenager has galvanized a team of South Asian volunteers to fix that problem for their own community.
WBEZ’s North Side Bureau reporter Odette Yousef has the story.
Bilal Mallick would have turned 16 last week.
He was a sophomore at Naperville North High School... a football player and on the Junior Statesmen of America Club.
He was supposed to go with the club to Washington DC in February.
Instead, he was in the intensive care unit at a hospital in Oak Lawn.
Bilal had leukemia, a blood cancer.
He went through chemotherapy.
Tanveer Mallick is his father:
MALLICK: We had started just before that the process of trying to see if a bone marrow match might be necessary, and had checked his siblings, my other kids, to see if there was a match within the family, and there was not.
The next place to check would have been the national bone marrow registry.
Bone marrow matches are more likely among donors who share the same racial or ethnic roots, because they have similar genes.
But like other minority groups, South Asians haven’t registered in great numbers.
Bilal’s roots are Indian.
Tanveer Mallick says that didn’t help Bilal’s chances of finding a match:
MALLICK: We’d started the process of doing drives to increase the number of people registered. And so a group of friends and colleagues got together and started to plan drives all around Chicago as well as around the nation.
But before the search started, Bilal came down with an infection, and he died from septic shock.
Tanveer Mallick says that created a crisis moment for the group that came together to help Bilal.
The immediate need was gone... but now they knew others might need help.
They were charged up, so they went ahead with their campaign, and dedicated it to Bilal.
KHADIR: Yeah, let me check your application to make sure everything’s ok. Filled out all the medical information...
OY: Drive organizers are looking for opportunities to find large numbers of south Asians together. That’s why Mateen Khadir and his dad are manning a table at the Downtown Islamic Center, in the community room. every seat at the table that Mateen has set up at the table has set up for bone marrow registrants is taken
KHADIR: What I need you to do is take out those swabs, and on teh four corners of inside of your mouth, on the cheeks, to rub them. Give them a good rub, for like 5 or 10 seconds each, and just throw them back in there.
MAN: One for each side?
KHADIR: One for each corner of your mouth.
Khadir says he gets lots of technical questions: What’s the drive about? How likely is it I’ll have to donate? Will extraction hurt?
But some South Asians have another concern.
Jennifer Baird is from Be the Match, a nonprofit that works with the National Bone Marrow program.
She’s helping the Remember Bilal campaign.
BAIRD: It was quite a surprise to me actually. A couple weeks ago at a mosque, I was doing some training pre-drive, and a gentleman asked me if the individuals Bilal, Rayan in New York, and Sonya in San Francisco, if these were figures that were created for propaganda for a "master list" of Muslims, collecting their DNA and their addresses in the United States, and I was so blown away and disappointed at the same time.
Baird says she hears similar concerns from other ethnic groups.
For example, Hispanics often worry she’s collecting information that will get them deported.
Baird says those suspicions disappear when bone marrow drives become a regular part of community events.
But that’s rare -- people usually start drives because a particular person falls ill.
Momentum passes after a donor’s found, or the person dies.
Baird believes this donor campaign will be different:
BAIRD: They organized a committee. This committee did all the training, they translated everything, they’re doing emails blasts, they’re doing flyers, they’re doing text messaging, they’ve got multiple facebook pages. I’ve never seen anything like it.
So far, Remember Bilal added more than 1000 South Asians to the registry.
They’ve also had drives in Arizona, Michigan, Ohio, and Massachusetts.
Baird says even if this effort couldn’t save Bilal, she’s certain it will save someone in the future.
Odette Yousef, WBEZ.