Five months old. That’s the age of my nephew, who now faces the first major challenge of his short life. You see, Ryland was recently diagnosed with a rare immune deficiency disorder called Wiskott Aldrich syndrome (WAS).
I’m familiar with Down syndrome and Williams syndrome, as I have friends who have children with those and I’ve looked into each of them. But WAS was new to me when it was brought up as a potential diagnosis a month or so ago and various testing began – testing that recently confirmed the diagnosis. I began research.
WAS is not visibly obvious. Our Ry looks like a perfectly healthy baby boy – it’s inside where the problems occur. He has a poorly functioning immune system and faces ongoing infections and frequent bleeding, which is difficult to stop due to a lack of blood platelets.
It is a very rare disease almost always affecting males, with only four boys born with it per every million births. Including Ryland, there are six cases of WAS in California. Without treatment, WAS has a high mortality rate, and affected children have an average lifespan of 5 to 8 years. Children born with WAS are susceptible to infections, spontaneous bleeding and often develop leukemia or lymphoma.
But there is always hope, and there is when it comes to WAS as well.
The first step to help Ry fight this disease is finding a bone marrow donor. My niece, Brooklynn, has been tested and we’re awaiting the results to see if she’s a good match. She has a 25 percent chance of matching, and if she doesn’t, doctors will begin their search on the National Bone Marrow Donor database.
When a bone marrow donor is found, my nephew will undergo chemotherapy, which will kill off his white blood cells. Following chemo, he will have a bone marrow transplant.
And then we wait.
It’s a time like this when I fully appreciate donors. And this is when I realize why I donate blood every two months, why I’m signed up on Be The Match and why I’m a registered organ donor. I have the opportunity to save the life of someone with a family that has the same overwhelming feelings mine is currently experiencing.
Although I’ve yet to be called upon for bone marrow, I like to believe that my years of donating blood have helped save at least one life.
Maybe my blood went to a teenager who had to be extricated from a crashed vehicle using the Jaws of Life.
Perhaps it was a mother who lost blood during a complicated surgery, and needed mine to eventually return home to her children.
Or possibly an infant with a bleeding disorder, such as hemophilia, desperately needed my blood to make it to his first birthday.
Regardless of circumstances, I can imagine the sighs of relief from moms and dads, brothers and sisters, uncles and aunties, when the announcement came that their loved one would be OK; that there were plenty of matching blood type donors, that matching bone marrow was found or the bittersweet moment realizing someone else’s loved one died for theirs to get a needed heart transplant.
Obviously, being a donor or registering to become a donor is an extremely personal decision based on health, values, religion and more. I made mine many years ago and would encourage anyone who has ever considered signing up to donate blood, platelets, bone marrow or organs, to do so.
As someone who has donated blood for years, it’s a simple process that takes about an hour of my day every couple of months. For information about blood or platelet donations, visit The American Red Cross at www.redcross.org.
To register as a bone marrow donor, visit Be The Match at marrow.org. Once you sign up, you will receive a type kit to swab the inside of your mouth. Send the kit back and they will type your sample and retain it in the event it matches a patient in need.
Your type may not match my nephew, but it may match someone else who desperately needs it – someone who may not see their next birthday without it.
As Ryland prepares for the fight of his life, my family anxiously awaits the news on whether his sister will be his bone marrow match. If not, we’ll pray for the day when we’ll let out a collective sigh of relief, when it’s announced that a match has been found and Ryland will be OK.
Learn more about Wiskott Aldrich at www.wiskott.org.
