If you've spent any time on Facebook in recent weeks, you've probably seen it -- a photo of a little boy in his baseball uniform with a wide grin and a plea to please help this child. The plea comes from Michael Lewis, a famous author and Baylor's old Little League coach. The boy is Baylor Fredrickson, an 8-year-old boy from California with leukemia whose family has been unable to find the bone marrow transplant he so desperately needs.
Because Baylor isn't just a kid who needs a bone marrow transplant. He's a child of mixed ethnicity who desperately needs a bone marrow transplant ... and mixed race donors -- particularly mixed race Asian donors -- are rare on what's called the donor registry, a group of volunteers around the country who have allowed their DNA to be gathered in case they can help someone in need.
The Stir talked to Baylor's mom, Shari Fredrickson, about what it means to have a child who has become the face of a health crisis facing many Americans, and how people can help kids like Baylor by becoming living donors of bone marrow.
The Stir: Tell us a little bit about Baylor.
Shari Fredrickson: Bay loves LEGOs, Minecraft, and is really interested in Greek mythology, Nerf guns, and cooking.
How was Baylor initially diagnosed with leukemia? What were the signs?
The only signs we had that there was an initial problem was he was tired a lot and that he had normal cold symptoms constantly (runny nose, cough ...). A friend suggested I have him tested for food allergies because he had developed alopecia (small bald patches on his head). He said maybe what he was eating could be the cause. We had a blood test completed to test for allergies.
Luckily, the doctor also added a full blood panel to be tested. The next day the doctor called saying to get him from kindergarten right away and take him straight to Children's Hospital. Another blood test confirmed our worst nightmare, leukemia.
Bay was diagnosed in 2012 with AML (acute myeloid leukemia).
How was it treated at the time?
He went through four rounds of intense chemo and was in remission for almost two years.
What was it like when you found out the cancer was back?
After being in remission for so long, our day to day life finally got back to "normal." In January, Bay caught a virus, a normal virus; however, our routine blood exams were showing signs of his (blood) counts trending down.
We were told this could be caused by the virus. We were told to wait ... again trending down.
This went on for three months. Finally a bone marrow aspirate was ordered to rule out a relapse. Turns out, he had indeed relapsed and the only thing that would save him would be a bone marrow or stem cell transplant. We knew what this meant. We knew our lives once again would be turned upside down. That Bay would not be able to continue second grade, that our [11-year-old] daughter [Maddie]'s life would be turned upside down also.
We were heartbroken and devastated.
What was the process from there?
We knew finding a bone marrow match would be tricky because ethnic make-up is a very important part in finding a match. Bay's dad is German, and I am Japanese.
Maddie was tested?
The best bet for a good match would be from either someone that was Asian/Caucasian or his sister. Unfortunately, there is only a 25 percent chance of siblings matching. Maddie was not a match. We turned to the national bone marrow registry and the international registry. Both came up with no matches.
Why is it so difficult to find a match for Baylor via the international and national registries?
There are only 7 percent Asian donors on the registry and 4 percent mixed Asians. Finding a match is said to be like finding your unrelated identical twin. There is a chance, but it's extremely rare.
Bay hanging out in the hospitalWhat have you done since?
So far we have used social media as best we can to reach far and wide to get the word out. We know there are hapas (mixed race Asians) out there, we just need them to know about Baylor's story and hopefully register to be a prospective donor.
Bone marrow drives have been set up at events and locations all over the world (Canada, Germany, Japan). In the US, people that have heard Bay's story, that live outside of the Bay Area, have taken it upon themselves to learn how to hold a bone marrow drive in their areas (Salt Lake City, Denver, Seattle, and Baltimore to name a few).
What's it like to have your son become the "face" of an issue like this?
No one expects to be "thrown" into something like this. After learning how disproportional the numbers of mixed Asian donors were compared to other ethnic groups, we felt telling Bay's story could help many understand how important it is to be counted. We couldn't be prouder to be a part of something that could potentially help save many lives.
What can people do to help?
If people would like to help, they can either find a bone marrow drive near them or go to Asian American Donor Program (AADP) for a free home kit to be sent to them. You will need to be between the ages of 18-44 and in good health.
If you know of a largely Asian populated area or event, you can be trained to hold your own bone marrow drive. The AADP would be happy to talk to anyone interested.
What is going on for Baylor in the meantime?
Baylor has just finished round two of his chemo treatment while he waits for a transplant. A bone marrow match would be the best option for him; however, a match has not yet been found.
What is the prognosis?
No matter what happens, we will continue to push forward trying to get as many Asians/mixed Asians on the registry as we can so this doesn't happen to anyone else. This shortage can be fixed! This shortage can go away if more minorities can step up to make a difference.
You never know if someone you love, or even YOU, will need a bone marrow transplant one day. Please help if you can.
Although Asian Americans are in high demand, you do not have to be Asian American to become a living bone marrow donor. For more information on joining the Donor Registry -- regardless of your ethnic background -- visit Be the Match. All it takes is a swab of your cheek to have your DNA entered into the registry. Patients' DNA is then put through the system for potential matches. It costs nothing for you -- even if you are matched to a patient in need.
Baylor says thank you ...
Have you joined the registry yet?
Images via Michael Lewis; Shari Fredrickson