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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.
Years - Passing - Ayelet - Father - Seth
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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Daughter - Ayelet - Disease - Doctor - Friend
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."
Message - Heart - Years - New - York
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.
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.
Chance - Disease - Effects - Daughter - Body
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.
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