I ran the New York City Marathon in memory of my baby daughter. It was 26 miles for every month she fought to live.

Seth Galena ran the New York City Marathon in memory of his baby daughter who died from a rare disease.

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Seth Galena ran the New York City Marathon in memory of his baby daughter who died from a rare disease.
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Seth Galena

  • After months of missed milestones and constant fevers, 1-year-old Ayelet Galena was diagnosed with a rare disease that affects one in 4 million people.
  • Her only chance at survival was to find a bone marrow match, so her parents got to work organizing bone marrow drives across the country. They found a potential match, but Ayelet ultimately died from related complications.
  • Seven years after her passing, Ayelet’s father, Seth, ran the New York City Marathon in memory of his daughter. He channeled her strength and perseverance to get through it.
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When I learned that our one-year-old daughter, Ayelet, had a rare and potentially fatal disease, I turned to my doctor friend, Sheemon, and asked him to level with me.

“This will be a marathon,” he told me. “Not a sprint.”

I didn’t know how right he would be, and just how closely I’d take that message to heart years later, when I actually ran the New York City Marathon in Ayelet’s memory.

After months of missed milestones, my 1-year-old daughter, Ayelet, was diagnosed with an extremely rare disease

The missed milestones, growth delays, constant fevers, and eating challenges, signaled to us that something wasn’t right with our daughter. But the slew of top pediatric allergists, gastroenterologists, and immunologists we visited had no idea what was wrong. That was until we met a geneticist who studied rare diseases. She finally put a name to our daughter’s condition, and it was terrifying: Dyskaratosis Congenita.

After months of missed milestones, and growth delays, 1-year-old Ayelet Galena finally got a diagnosis and needed a bone marrow match to survive.

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After months of missed milestones, and growth delays, 1-year-old Ayelet Galena finally got a diagnosis and needed a bone marrow match to survive.
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Seth Galena

It is so uncommon that there’s only a 1 in 4 million chance of developing the disease. It had many debilitating effects on my daughter’s body, the worst of which was bone marrow failure. She needed a bone marrow transplant, and we needed to find her perfect match immediately.

At first, we began slowly, just trying to get the word out.

I work in advertising, and I knew enough about social media to jumpstart our efforts. I teamed up with registries like DKMS and Gift of Life, which work to match patients in need with viable donors. Through that, and my own Upper West Side Jewish community in New York, we started to build momentum.

It was surreal to see posters with our Ayelet shared across our networks.

The baby’s only chance of survival was to find a bone marrow match

That smiley face moved apathetic people to take action, to feel something. We started with one local drive, where participants swabbed their cheeks to get a sample of their bone marrow, which was then entered into an international database.

That event snowballed into hundreds across the country. Thousands of people scraped Q-tips to the insides of their mouths in hopes of being the one to save our baby’s life.

Celebrities retweeted our daughter’s face. CBS and The Daily News ran features about her. Her angelic face was everywhere.

Her parents launched a campaign and inspired hundreds of people to partake in bone marrow drives, and the media took notice.

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Her parents launched a campaign and inspired hundreds of people to partake in bone marrow drives, and the media took notice.
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Seth Galena

Through our efforts, we found 170 lifesaving bone marrow matches for other strangers in need of bone marrow transplants.

Our campaign inspired hundreds of people to enter international bone marrow registries

We never did find our perfect match. But we came close.

It meant relocating for about six months to Ohio to the Cincinnati Children’s Hospital, which has one of the best transplant teams in the country. We moved away from our friends, our families and our jobs. It was a no-brainer to get the best treatment for our daughter.

The family was ecstatic to learn that they had a potential match. It meant moving to Cincinnati, Ohio for about six months.

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The family was ecstatic to learn that they had a potential match. It meant moving to Cincinnati, Ohio for about six months.
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Seth Galena

When we got to Cincinnati, we started a blog documenting her battle, her progress, updates for our friends and family who were far away.

It was then we realized we were totally wrong about Ayelet. She wasn’t just the cheerleader in this race. Not just the fan. Ayelet was the star.

Through our daily posts of her photos, videos and medical updates, her personality jumped right off the page. Unraveling hospital straws and medicine bottle stickers would become her pastime. She found joy in joking with the staff as they poked and prodded her daily. Her giggle made her an overnight transplant ward celebrity.

The bone marrow drives we organized found matches for 170 people in need

Thousands took notice. The day of her transplant, I looked at Google Analytics, and there were 60,000 views on our blog alone.

These digital spectators, who we later dubbed “Ayelet Nation,” were strangers compelled to follow her every day like she was the newborn next door.

We got get-well letters from an entire class of school kids. Others sent funky hair-bands for her head – bald from chemotherapy. We learned about group acts of kindness dedicated to her recovery. She could not walk, or speak but her vibrancy in the face of living in a hospital hell was otherworldly.

Supporters got swabbed, committed to acts of kindness, sent headbands to the little girl all in hopes of doing something to help.

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Supporters got swabbed, committed to acts of kindness, sent headbands to the little girl all in hopes of doing something to help.
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Seth Galena

When we made it through a successful transplant, her Internet following cheered. We thought we were home free, with a mad dash to the finish line.

After her transplant, Ayelet caught a cold, developed an infection, and died

But, sadly, Ayelet caught a cold. With no real immune system to fight it off, it spread to her lungs. We did everything we could, but it would not be. One hundred and fifty days after her transplant, she lost her battle. We lost our daughter. Our light.

Like deers lost in headlights. We were filled with shock, guilt, depression, rage.

It’s been almost seven years since Ayelet died.

I’ve tried to fill the gap with all sorts of short- and long-term fixes, but I’ve come to the realization that my loss and trauma will be with me always.

7 years after her death, I decided to run the New York City Marathon in her memory

Seven years after his daughter passed away, Seth Galena ran the New York City Marathon in her memory.

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Seven years after his daughter passed away, Seth Galena ran the New York City Marathon in her memory.
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Seth Galena

When a friend suggested I sign up for New York City marathon again this year, I initially hesitated. I was out of shape. I hadn’t done all the training. I was busy with a new work project. There were a million valid reasons to decline.

Then I saw one of the bone marrow registries – DKMS – had a team. I suddenly felt the need to raise my hand and jump into the marathon like they – and so many others – did for my Ayelet. I felt the responsibility to get back out there, both in running and in life. It was my turn to race, train and be mindful and present of the loss of my daughter, and carry her with me.

On marathon Sunday, I emblazoned her name on my shirt sleeve at the start. When the starting canon shot at the Verrazano Bridge in Staten Island, I remembered her marathon journey. The pain she endured. I leaned on the cheers of 26.2 miles of connected strangers rooting for me and her, and the prayers of those pushing through the pain when things got rough all those years ago.

Seth Galena committed his race to his daughter and to raising funds for DKMS, a nonprofit that works to find bone marrow matches.

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Seth Galena committed his race to his daughter and to raising funds for DKMS, a nonprofit that works to find bone marrow matches.
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Seth Galena

Ayelet lived just 26 months. A month for every mile I ran.

In that blink of time, she inspired more people to do good than anyone I know.

I managed to finish the race after some rough moments. The highlight was hobbling past my family’s cheer squad at mile 24. My wife, Hindy, and our three children we’ve had since our loss – Akiva, Talia and Gavi – going gonzo for their marathon maniac of a dad. Tears of joy in my eyes helped me surge through and embrace the soreness everywhere else riding that high home.

Seven years after her passing, Ayelet's father, Seth Galena ran the New York City Marathon in her memory. Cheering him on was his wife, and three children he has had since.

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Seven years after her passing, Ayelet’s father, Seth Galena ran the New York City Marathon in her memory. Cheering him on was his wife, and three children he has had since.
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Seth Galena

Next year, I will do better. I will turn it up a notch. But in reality, it doesn’t matter – so long as I keep running, keep living, with the understanding that the loss of my daughter will always be a part of me, something to embrace and wear with pride, like the clutch of my Ayelet, always by my side. Brokenhearted, but not broken.