NEW YORK (PIX11)—Ask Odiney Brown about her little girl, Shannon Tavarez, and in a heartbeat, she'll tell you she had a spirit as strong and as fierce as "Nala," the lioness cub Shannon played in the Broadway mega-hit, "The Lion King." Her spirit was more than willing, but sadly it wasn't strong enough to help her beat a bout of leukemia, which claimed her life on Nov. 1, 2010.
The sixth-grader was in Broadway heaven for seven months starting in September of 2009, until doctors diagnosed her with acute myeloid leukemia, a particularly aggressive cancer of the blood and bone marrow. That was just a year ago, April 2010. She began chemotherapy immediately, finished fifth grade, but missed her graduation and school dance.
Her castmates wasted no time pulling together a bone marrow drive at the Minskoff Theatre, home of “The Lion King.” Sadly, a match never materialized, and therein lies the rub. Had one been found in time, Shannon would in all likelihood be back on stage doing what she loved, lived and breathed: performing.
"It makes me feel good to know because of Shannon's story, we got 15,000 people to register, and out of that we had eight potential matches," Odiney says.
Sadly, Shannon had several strikes against her. The fact that she was part African-American, part Hispanic and an only child, made the chances of finding a match for her between slim and none. Seven million people nationwide are listed as potential donors. But, only 12 percent are minorities, according to data from DKMS Americas, a New York, non-profit organization founded in 2004 that recruits volunteer bone marrow donors of all races and ethnicities to help leukemia patients in need of a bone marrow transplant. It is the U.S. offshoot of DKMS (Germany), formed to help leukemia patients in need of bone marrow and blood stem cell transplants.
Blacks and Hispanics are under-represented in the registry of potential donors. Data supplied by national bone marrow programs shows only 7 percent, or approximately more than a half-a-million, are Black; only 3 percent are Hispanic and 2 percent Asian. As one DKMS executive put it some time ago, "...it's like finding a needle in a haystack, looking for a genetic twin."
But, Odiney is determined to turn her pain into a legacy for Shannon that will prove to be a "Circle Of Life" long after her untimely passing. That's why she's on a crusade to put a huge spotlight on the importance of bone marrow donation -- particularly in minority communities.
"You know, I just tell people... you never know. This can hit close to home," Odiney says, explaining why it's so important for people, particularly minorities to be tested. "It's nothing to be afraid of... that can give someone a chance to find a better match in the hope of getting through this and getting better."
There are few things more gut-wrenching for loving parents than to bury a child. To help channel all that grief, Odiney started the Shannon's S.H.A.R.E Foundation. S.H.A.R.E stands for Support, Hope, Aid, Recruit, Educate. The online mission statement says in part that it's committed to "providing support, hope and aid to patients and their families, with a focus on those in need of bone marrow transplants."
Odiney adds..."along with educating people about donating (bone marrow), we also want to work with financially assisting families. We're working on something called 'Operation Cellphone,' paying someone's cellphone (bill) because it's so important to have that phone on, so that you can be in communication with other people -- as well as your child."
It also helps Odiney to know how Shannon's castmates felt -- and still do -- about their "littlest cub."
"My first impression of her was that she was this delicately beautiful child, gorgeous girl with a sweet smile... and very much a lady. But she had this edge to her. She was a confident girl and she was not afraid," remembers Jean Michelle Grier.
Alvin Crawford -- another castmate -- echoes Jean Michelle. "When we were going through this in the summertime (2010), I was just so impressed by her strength, and how she was able to articulate what was going on...and that has a lot to do with her mom... I thought, if she had all of that courage, I could have the courage to help fight."
Another indication of the love and affection Odiney's little girl has engendered among her castmates is evidenced by what they've done with her dressing room. "This is going to be known as the Shannon Skye Tavarez Memorial Wrangler Room," Alvin explains to an emotional and visibly moved Odiney. "It will be here for as long as ' Lion King' will be in this building."
In the meantime, Odiney says she just puts one foot in front of the other. "I just take it one day at a time...I have my days... I cry, but it always ends up with me laughing, or smiling about something I remember about Shannon, something funny she said... something funny that she'd done."