Like so many young couples, Lindsey and Alex Boggan wanted to be parents – and they tried, unsuccessfully for years to fulfill that dream – without much luck.
But finally, in 2010 it seemed their luck had changed, when Lindsey gave birth to a beautiful baby girl they named Kate.
Like every new mom, Lindsey says she immediately opened her swaddled bundle of joy and began counting – 10 fingers, check; 10 toes – check. An adorable button nose, perfectly shaped lips, rosy cheeks – check, check, check. Lindsey says she and Alex heaved a sigh of relief – they finally had the perfect little baby they had always hoped for.
But less than a year after Kate’s birth, Alex and Lindsey received a devastating blow: Their beautiful baby daughter was diagnosed with a form of bone marrow failure – a potentially fatal disease that affected her ability to make healthy blood cells. Instantly her parents knew she was in for the fight of her life.
“Kate is a fighter. She proved that a while ago. I just wish she didn’t have to fight this fight,” says her mother Lindsey.
When our bone marrow fails us: What goes wrong?
Normally, blood cells are manufactured by what is called stem cells – “master cells” that reside in bone marrow, a spongy tissue found inside the bones of our hips, skull, ribs, spine and breast bone. These master cells are able to reproduce almost any type of cell the body needs – including blood cells.
But when blood cancer – or other bone marrow diseases – strike, suddenly our body doesn’t work quite the way it should. Instead of producing healthy blood cells, we begin churning out defective, immature cells that in turn interfere with the production of healthy cells – and crowds them out.
As the number of defective blood cells rise and the number of healthy cells falls, it becomes near impossible to survive.
And, in fact, blood cancers like leukemia – and related bone marrow diseases – are the leading cause of death in children in the United States, according to Katharina Harf, COO of DMKS America, the world’s largest non-profit bone marrow registry. At the age of 14, Katharina lost her own mother to leukemia.
A match made in heaven
As devastating as these numbers are, there is hope and help – and in comes in the form of donor bone marrow cells.
Indeed, while chemotherapy is a necessary treatment able to destroy the diseased cells, in the process it also destroys the good cells. So, after the treatment, healthy blood cells still cannot be made.
But with a bone marrow transplant – a procedure that infuses the body with the healthy bone marrow or stem cells of a donor – our own body can begin again to produce the healthy cells we need to survive.
The catch: There has to be a tissue type match between donor and recipient – and that’s not so easy to find.
While a bone marrow or stem cell transplant from a twin sibling is almost always an identical match, and that from a non-twin sibling is sometimes a match, because we are a genetic combination of cells from both our parents, the bone marrow of either parent alone can never be a correct match. Since Kate Boggan has no siblings, like so many other affected children her only hope is finding a stranger with a tissue type match and a willingness to donate the needed cells.
Sadly, only 4 out of every 10 patients is lucky enough to find that matching donor. And for those who don’t?According to DKMS every 10 minutes someone with a bone marrow disorder dies. Most are children.
Changing the odds: You can make a difference
As devastating as these odds are, experts say they can change – and getting more donors registered is the way to do it. To this end, DKMS has made it easy via the creation of a free online bone marrow registry – www.GetSwabbed.org.
Here, you can sign up for a free donor registration kit. Once it arrives you take the enclosed swabs and rub them along the inside of your cheek and send them back to DKMS. From this they can identify and type your bone marrow and place you in a nationwide registry available to anyone looking for a match. If that match is made, DKMS helps put together donor and patient. For those who find their donor, it’s a match made in heaven. To date some 25,000 DKMS donors have given someone that slice of heaven.
While donating bone marrow or stem cells is not quite a walk on the beach, the procedure is less complicated than most people think.
Once you’re identified as a match, you spend an outpatient day at a local medical facility where you will donate either bone marrow (which requires a simple outpatient surgery) or, as is most often the case, blood stem cells – which is not much different than giving blood. Usually you’re back at work the next day knowing a life has been saved. Most important – you don’t have to actually make a donation until you know you are a match – and a life can be saved.
To learn more about becoming a bone marrow or stem cell donor – and maybe saving the life of Baby Kate or another child – visit www.GetSwabbed.org. Do it – it’s better than buying a rubber bracelet and it can make you feel like a hero in a way nothing else ever will.
Colette Bouchez is an award-winning medical journalist and the author of ten health books. Her latest is Green Fertility: Nature’s Secrets for Making Healthy Babies.