Running for Ayelet

October 31

My name is Seth Galena. On Sunday I'll be running in the New York City Marathon. And I won't be running alone. Sure I will have my friends from DKMS at my side as we all raise awareness and funds to delete blood cancer, but I'll also have the memory of my infant daughter Ayelet guiding me along the way.


Ayelet was a ball of light that entered my and my wife Hindy's life in 2009. Our first child! She was everything Hindy and I could have hoped for. But at six months we noticed Ayelet wasn't hitting her milestones - she wasn't eating as much, her body had stopped growing.

It took several months of tests before we discovered that Ayelet had a rare genetic disease called dyskeratosis congenita and needed a bone marrow transplant. So many people with blood cancers depend on the bone marrow donor's list and finding perfect matches can be hard. We were thankful to have a tremendous community of friends and family who came together to help us with swabbing drives at work and in our Upper West Side neighborhood. It was my office, in fact, that put me in contact with DKMS, who were crucial in boosting the signal on my daughter's story.

Sorting down to find a perfect match is a numbers game. Through DKMS we were able to get our story out on the news, in magazines, and social media - we even had celebrities, people we'd never met, sharing Ayelet's story and encouraging people to swab. The outpouring of support in that dark time was a blessing. And it was through that blessing that we eventually found a match.

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These transplants are a lot to go through for anyone, let alone our less than two year old daughter. Thankfully she was in great hands with the staff of Cincinnati Children's Hospital. Ayelet began her treatment and bone marrow transfusion in the summer of 2011. Hindy and I, first-time parents both, breathed a sigh of relief as we assumed the worst was behind us.

However, life sometimes has plans of its own.

One of the side-effects of a bone marrow transplant is a severely-weakened immune system. The simplest of infections or viruses can wreak havoc on your body. We learned this when the doctors told us Ayelet had gotten sick during her recovery. We thought we were home free and now here we were with a brand new challenge.

Hope is the most important thing you can have in these kinds of situations. Making decisions, moving forward, taking action. We held on to our hope, and prayed for our fighter, our light, who needed our strength now more than ever.

Ayelet was brave and she fought with everything she had. Not even two and teaching her parents what real strength can be. Unfortunately, the odds and the infection were too much; she passed away in early 2012.

It was a devastating loss for Hindy and I. We took solace in our family, our friends, each other. Eventually, we were ready to try for children again, and in 2014 we welcomed our first son. We now have three healthy, beautiful kids.

But we always remember our Ayelet. A child that taught us how to endure. Who taught us how to be brave.

I look back at that time and I remember the hope that organizations like DKMS gave us, how they made an overwhelming situation seem a little less intimidating. I think of how the world came together for our daughter. And I remember that every little bit helps - every last cent, every bit of hope, every ounce of support that is given. We can do so much more for anyone in that situation. And if I can help build a future where no one has to experience what we went through, then a few hours of hard running is more than worth it.

So before Sunday's race, I'll consider the distance, I'll consider the time, I'll consider the pain that will come with the marathon. Then I'll think of her. And the rest will come easy.