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Kevin Weston and Lateefah Simon launch national search for bone marrow match, seek to register 1,000 African Americans

January 18, 2013

by Ayoka Turner and Bilen Mesfin

A San Francisco Bay Area newlywed couple, Kevin Weston and Lateefah Simon, have started a national effort to register 1,000 African Americans as possible bone marrow donors and find a match for Kevin, who needs to undergo a transplant in less than two months for an extremely rare form of leukemia.

“My story is just one of many,” said Kevin. “There are thousands of African Americans and people of color around the country who desperately need a bone marrow transplant but can’t find a match. My wife and I started this campaign to do what we can to raise awareness about this urgent issue and to register as many people as possible.”

Lateefah, Lelah, Kevin Weston 0113
Lateefah, Lelah and Kevin
Kevin, a 44-year-old award-winning new media journalist, is father to Lelah, 1, stepfather to Aminah, 16, and husband to Lateefah, a civil rights leader and MacArthur Genius grant award recipient. In August 2012, Kevin was diagnosed with T-cell Prolymphocytic Leukemia (T-PLL), which primarily affects adults over the age of 30. The cancer is very rare and aggressive, with only 10 cases per year in the United States. Since being diagnosed, Kevin has endured a month-long stay in the ICU, five emergency surgeries and multiple hospitalizations.

Every year, more than 10,000 patients in the U.S. are diagnosed with life-threatening diseases for which a marrow or umbilical cord blood transplant from an unrelated donor may be their best or only hope of a cure. About 70 percent of patients in need of a transplant do not have a matching donor in their family and depend on an international registry to find a match.

Patients are more likely to match someone from their own ancestry. Only about 7 percent of the nation’s 10 million registered potential bone-marrow donors are African-American.

“Every day, I ask for forever with Kevin,” said Lateefah. “I know there is a match out there, and I want to do everything in my power to find that person who will save the love of my life and Lelah’s daddy.”

“My story is just one of many,” said Kevin. “There are thousands of African Americans and people of color around the country who desperately need a bone marrow transplant but can’t find a match. My wife and I started this campaign to do what we can to raise awareness about this urgent issue and to register as many people as possible.”

Kevin and Lateefah are working with local organizations and volunteers to organize a series of drives in the San Francisco Bay Area. The drives currently scheduled include:

  • Jan. 21, from 11 a.m. to 6 p.m., at the African American Museum and Library, 659 14th St. at Martin Luther King Jr. Way, Oakland
  • Jan. 21, Martin Luther King Jr. Health and Wellness Fair, San Francisco, 11 a.m. to 5 p.m. in the Grand Lobby of the Yerba Buena Center for the Performing Arts, 750 Folsom St. at Third Street, in conjunction with the San Francisco chapter and the Western regional office of the NAACP
  • Jan. 27, from 3 to 5 p.m., at the Third Baptist Church, 1399 McAllister St., San Francisco
  • Feb. 11, from 1 to 5 p.m., at San Francisco City Hall, San Francisco
  • Feb. 23, from 10 a.m. to 3 p.m., at The Quad, 525 Fourth St., Oakland

The couple urges African Americans to find and attend a local drive in their community and to join the Be the Match bone marrow registry. Registering takes just a few minutes, and involves a pre-screening and swab sample of the inside of the cheek. People can also go online to www.marrow.org and order a kit to be sent to their homes.

Kevin and Lateefah’s Story

“My heart. My joy. Stay here. Please stay here.” – Lateefah Simon, Aug. 31, 2012

In 2012, life was good for Kevin Weston and Lateefah Simon. Deeply in love, the young couple was raising their beautiful daughters Lelah, 1, and Aminah, 16. Kevin, a long time Bay Area journalist, had just been admitted to the prestigious John S. Knight journalism fellowship at Stanford University. Lateefah, a nationally recognized civil rights leader, had started a job as program director at the Rosenberg Foundation and in the spring was to start the SEERS fellowship program for social entrepreneurs at Stanford University.

Kevin Weston, Lelah 0113
Please help save Lelah’s daddy!
Then, in an instant, everything changed. Now, Kevin and Lateefah urgently need your help.

On Aug. 27, 2012, three days before his 44th birthday, Kevin woke up with a sore throat.

At Lateefah’s insistence, he went to Kaiser Hospital in Santa Clara. He was admitted to the ICU and diagnosed with a deadly flesh eating bacteria – and a rare form of leukemia. Known as T-cell Prolymphocytic Leukemia (T-PLL), the cancer is very rare and aggressive, with only 10 cases per year in the United States. It primarily affects adults over the age of 30.

Doctors told Lateefah that she should gather his loved ones to see him. It might be their last chance to do so, they said. People came in droves from far and wide, organized fundraisers and food deliveries, shared their grief on social media, held prayer circles, stood vigil outside the ICU and hoped for a miracle.

On Aug. 28, Kevin underwent the first of 5 emergency surgeries to clear the life-threatening bacterial infection.

On Saturday, Sept. 1, Kevin opened his eyes and told Lateefah that he was ready to get married. And so they did, surrounded by more than 30 friends and family members crowded around his bedside. In photos of that day, Kevin is in a white hospital gown, eyes closed. His face is swollen from the surgeries and raging infection; there are tubes and monitors attached everywhere.

“For better or for worse, in sickness and health,” Lateefah vowed. Too weak to speak, Kevin could barely nod his head, but he squeezed Lateefah’s hand.

And then, a miracle occurred: Kevin continued to recover. On Sept. 24, almost a month after first going to the hospital with a sore throat, Kevin walked out of the hospital with Lateefah, Lelah and Aminah by his side.

Kevin and Lateefah urgently need your help.

But Kevin and Lateefah’s story is not over. Today, Kevin continues to undergo chemotherapy and has endured multiple hospitalizations. In order to truly have a chance at life and living, he needs to find a bone marrow donor by the end of February of this year.

Unfortunately, right now, the odds of Kevin finding a match are slim. Only about 7 or 8 percent of the nation’s 10 million registered potential bone-marrow donors are Black.

Help save Lelah’s daddy. Help Kevin and Lateefah change the odds for their family by helping to increase the number of African Americans registered to be bone marrow donors.

Join Be the Match bone marrow registry today. It takes just a few minutes to do the pre-screening and order a kit to be mailed directly to you, and you can be the one to save a life. Learn more at KevinandLateefah.com.

A psalm for teef and weston

Black Media Appreciation Night Kevin Weston receives award Yoshi's 112612 by TaSin Sabir
Kevin Weston, brilliant and beloved writer, editor and nurturer of young journalists, brought down the house when, despite his grave illness, he appeared in person to accept his award at Black Media Appreciation Night at Yoshi’s in Oakland on Nov. 26, 2012. – Photo: TaSin Sabir
(the poem my maker gave me at one this morning)

by Chinaka Hodge

we all
every one of us
is good at counting celestial bodies:
constant stars
ill-formed clouds
blinking andromeda
dark blessings
we know our angels well
we salute them almost out of rote now
know you are among them, always
it is simply your nature
thank heaven, you know
thank heaven you two found each other
bless all that is good and wrap it around your bodies
tie these bright thoughts and garland and sage to your feet
bind them
be bound only by the love we inject into them
remember how
remember how you taught us to be fiercely unforgiving
unrelenting
unwavering in love
in love
before you two ever met each other
you were practiced
in love and only love first
you gave us language for finding ourselves
spoke from the base of your stomach as lovers
of us first
there has never been a rush hour
never been a time you have clocked out of work
you just keep on showing up
just kept on surrounding us with your prayer and deed
and outright genius
you have been father even when you were woman
and mother even when baba would have sufficed
and taught us how to count our blessings
our angels, how to see them
our seraphim, how to know them
everyone else taught us to look for light and airy white beings
but you two, being sage
taught us to find the cast iron, the black and shining,
the night finds us and sings us to sleep
and you pointed to it and said there
there it is

Kevin Weston-Lateefah Simon wedding Kaiser Hosp. Santa Clara 090112-1
The wedding kiss, Sept. 1, 2012, at Kaiser Hospital in Santa Clara
there you are
all holy
crafted like savior
holy
holy
this prayer you have given us?
only right we should shuttle it back to you
only right you two should marry in struggle
and kiss in struggle
and raise babies who are unafraid of struggle
and do it all with grace
God is your protector
you are our teachers
we hold you up to God’s face
pulley to you, this thing you have shown us is our own self for so long
so we surround you with upside down cakes
and serums
balms and holy text
we give you not enough
and everything we have
we are praying for both of you
it is almost selfish
this thing we wish to reciprocate
all of the times you have traveled to our scariest
most bruised places and offered only your smile
only your truest most diligent offerings of agape
as you were taught by your maker
we attempt to show you that we have learned by
example by God
by faith and not by
sight
see?
we will keep on walking toward you
circling this hospital
this treatment
this wide, daunting, trembling unknown
we will keep on showing up
til disease takes a break
retires cowers in a corner
all its own
oh Lord, did you know how much we loved them
Did you see us all sit on the edge of our chairs and wait for teef
to rejoice and mr. weston to fling his hands wide and take the baby to his chest
Black Media Appreciation Night Lateefah Simon, Kevin Weston big kiss backstage bw 112612 by Pendarvis Harshaw
When Kevin left the stage on Black Media Appreciation Night, Lateefah was waiting backstage with a big kiss. – Photo: Pendarvis Harshaw
hear us when we ask you to circle all them
into your all encompassing grace
give us light and dark
and thorn
and smooth
and honey and salt and bitter taste
give us the implements of love.
give us the implements of love.
put them in the hands of the learned
and God fearing.
make us, well.
come on now, church shout with me.
make us all well.
like hagar
like reaching for him. the hem of a garment.
like ring shouts
well. well. wail.
a wail like old time religion:
I asked the Lord and He heard my cry …

 

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