Life is beautiful

By Evelyn Argirokastritis — mother to an 11 month old son who is waiting for a bone marrow donor

They say life is beautiful…but not always perfect.

Hi. My name is Evelyn. I’m a 29-year-old mother of two from Macomb, MI, and to most people I have a seemingly perfect life.

In fact, if you saw pictures of my life from a far you would see that I have a wonderful family, good friends, a great husband, two beautiful children and that I’m surrounded by love, smiles and laughter.

Evelyn’s son, 11-month-old Elias (L), and her daughter, 2 1/2-year-old Eleni. (Photo credit: Evelyn Argirokastritis)

But like most of us, the shiny exteriors of perception are not always as they seem. If you get closer to the images of my life, you might notice some chips, smudges, and a realization that it’s not all pretty and fancy all the time. In fact, if you zoom in a little more, you’ll clearly see that I am dealing with an enormous obstacle. A challenge that is so worth fighting for but one that consumes every second of every day. The fact is, my 11-month old baby boy Elias is fighting for his life. Each and every day, our sweet, precious soul, fights for his life. And while his tiny body fights, my family and I fight with him.

Elias suffers from a rare immunodeficiency disease called NEMO, nuclear factor-kappa B essential modulator deficiency syndrome. NEMO affects only boys and is so rare that his diagnosis in October made him just the 22nd registered case in the U.S. Basically, he doesn’t have an immune system that works for him so he’s susceptible to severe and life-threatening bacterial infections. This makes even the most minor illnesses life-threatening.

Because of that, our day-to-day is a little different from the norm. We cannot go anywhere with large crowds for worry of infection. We had to take our 2 ½ year old daughter Eleni out of day care and when she gets even a sniffle, they must be separated. These limitations make it so it’s challenging for her meet new friends, have play dates, or swing on the swings at a public park. It’s so hard to watch a vibrant little girl who is strong, smart, and was a go-getter from the moment she arrived, be held back by fear.

We’re in desperate need of a match from a bone marrow donor to replace the bone marrow he currently has. Since February, it has been our unwavering mission to find Elias a match because once that glorious day arrives, everything will change for the better.

Yes, Elias will still have to go through chemotherapy and radiation, have the bone marrow transplant, then spend 100 days in a sterile environment, but a mere six months after that, he will begin to live a normal, healthy life.

“It’s a living hell to see your child deteriorate in a hospital, to watch his every breath and wonder if it’s going to be his last, to sign waivers or be asked to sign Do Not Resuscitate forms, or see his teeny body go through chest compressions.”

I dream of those magical days when he will be able to go outside, be amongst people, go to kindergarten, make friends, go on a family vacation, go to a restaurant for dinner, and do all the things a little boy can do. We remain hopeful and determined and our spirit is indubitably strong but until those days become our reality, we will not rest.

Although we have been blessed with a community of people willing to help us by registering as a bone marrow donor, believe it or not, we have received some unexpected backlash from people unwilling to do so despite the fact that they could be Elias’ potential lifesaver.

It always surprises me when people just come out and say, “I’m too busy right now” or “I don’t have the time to help” or “I don’t like to hear bad news.” It hurts me deeply because all I ask is a moment of time to help give my son an entire life. I think to myself if I was at Starbucks and I needed to borrow someone’s charger so my phone wouldn’t die, you’d let me borrow it, right? I’m a Mommy who needs someone with the right bone marrow to help so my son doesn’t die. It’s a living hell to see your child deteriorate in a hospital, to watch his every breath and wonder if it’s going to be his last, to sign waivers or be asked to sign Do Not Resuscitate forms, or see his teeny body go through chest compressions.

We are grateful to have overcome so much and we’re stronger than ever, but every day we must keep pushing. And we will never give up our pursuit of saving Elias’ life.

A simple cheek swab is all it takes. If you’re already registered we kindly ask that you share our story. The more people hear about Elias, the more people can be tested.

Life may not always be perfect but yes, it is beautiful and I’m asking you today if you’ll please help give my baby the chance to have one.


Register to be a bone marrow donor, visit dkms.org.