Bay Area journalist Kevin Weston, 44, says he has no recollection of marrying the love of his life, Lateefah Simon.
That was because his wedding ceremony took place inside the intensive care unit at the Kaiser Santa Clara hospital in California, where Weston laid helplessly in his hospital bed attached to tubes and monitors. Weston was diagnosed with a rare form of blood leukemia just a month before their last-minute nuptials.
“At the time, I was in very bad shape and the doctors didn’t think I was going to make it. My wife made the decision to get [married] before something really bad happens,” Weston told theGrio in a phone interview. “I have no idea what [my wedding] was like. I was on all these drugs, but I was awake enough to say “I do.” But I don’t even remember that. I don’t remember anything about that day.”
Four months later, Weston and Simon, who also have a two-year-old daughter, Lelah, had the chance to say ‘I do’ again in a renewal ceremony at San Francisco City Hall two weeks ago.
Weston and his wife Lateefah also decided to make their renewal ceremony part of another national mission — to garner 1,000 more African-American donors in the bone marrow registry.
“It seemed to be the right thing to do, to build awareness around this issue,” says Weston. “We thought it was a good opportunity to do something public and also personally to celebrate with our community and acknowledge their contribution.”
Weston and Simon’s renewal ceremony was officiated by State Attorney General Kamala Harris. Weston, who is a John S. Knight journalism fellow at Stanford University, hoped this event will bring awareness of this issue to local and state officials.
“We really took our cues from Robin Roberts who did so much to get people registered. She used her position to create awareness, and we felt we can do something similar in the Bay Area to help save people’s lives,” Weston says.
Robin Roberts, a co-host on ABC’s Good Morning America, was diagnosed last year with a similar condition called MDS, or myelodysplastic syndrome, and successfully received a bone-marrow transplant from her sister. Roberts’ has rallied both on- and off-screen to encourage more people, especially minorities, to register in the bone marrow registry. She plans on returning to her post on GMA today.
theGrio: MDS: Robin Roberts’ bone marrow condition explained
Both Weston and Roberts are just two of the many minority patients who are in dire need of bone marrow transplants. According to Be The Match Registry spokesperson Nadya Dutchin, African-American donors only consist of seven percent of the nation’s 10 million registered bone marrow donors, with black patients only having an estimated 66 percent likelihood of finding a willing and able donor in the registry.
Dutchin, who happens to be black, understands why the African-American community has a general mistrust of the medical community; however, she contends that people need to weigh their fears of donating to saving another person’s life.
“One single African-American person can alleviate the pain and suffering for another, just by really and truly educating themselves, being brave and stepping forward and coming through with the donation,” Dutchin says. “Robin was so grateful and so generous and shared her story with the public and we saw our online registrations triple within days. She brought that awareness and we [still] need for more people to join the registry.”
theGrio: Despite ‘Lion King’ star’s efforts, donors still scarce in black community
“It seems like this big daunting thing, but really it’s a very simple process,” says Weston. “It’s not painful and [you] usually just go there one day and they take care of you.”
And it’s true, Dutchin says, the process is relatively simple and painless. More than 70 percent of the time, donors are given an injection that will release bone marrow into the bloodstream. For one day, the donor will get blood drawn out from one arm; a machine will extract the marrow from the bloodstream and then the blood will be returned into the donor’s other arm.
“We’re not actually taking something from you. We’re making your body make something extra, leaving you with what you started with,” Dutchin explains.
Weston’s mission to gain more African-American bone marrow donors is something he says he can accomplish for others waiting for a match.
“Basically this drive is to give back,” he says. “There’s small chance that someone that will match me at this point. Statistically it’s probably not likely. [But if] you get a thousand more people – that’s a thousand more people that have been educated and hopefully they’ll be people who will take the next step [and donate]. It’s a snowball effect.”
Weston actually did find a match in the registry, but the donor was unable to go through with the donation. The 44-year old Oakland native is now turning to his half-brother for a haplo transplant which he says works almost as well as a full match non-relative donor.
“It’s a waiting game for me. My prognosis isn’t dire, but it is urgent. We’re trying to get [the haplo transplant] done as soon as possible,” he says.
Weston currently has registered over 800 African-Americans in the registry so far and are holding more drives in the following months. A Be the Match spokesperson told theGrio that hundreds of people have registered to be donors at Weston’s renewal ceremony, but they have not determined how many of them are African-American.
To register for the bone marrow registry on Be the Match Registry, click here.
Follow Brittany Tom on Twitter @brittanyrtom