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I love asking for money. I’m particularly passionate about fundraising for Children’s Hospital Boston. I’ve raised money as a volunteer for years, running with Children’s Marathon team and participating in the yearly NSTAR Walk. Now fundraising is my job, as a development specialist at the Children’s Hospital Trust.
Ever since my son’s life was saved at Children’s, I’ve been fortunate to meet some of the world’s most gifted clinicians and brilliant scientists, and I’m thrilled to have a front-row seat watching them shape medicine’s future.
I was an unlikely candidate for fandom. I was never interested in medicine, and growing up in Mexico City, I had an aversion to hospitals—I didn’t like the way they smelled. But after spending nearly 1,000 days at Children’s with my son, I’m amazed to find myself its number one cheerleader. It must be because this hospital smells like a bakery.
My wife, Paulina, and I first heard about Children’s from a neighbor in Mexico City, who knew that our baby had been sick since birth with life-threatening infections, especially in his digestive tract. Our neighbor recommended we call her cousin, Samuel Nurko, MD, a gastroenterologist who, she said, worked at the best pediatric hospital in the world. When I called him, Andy was barely surviving. He was being fed intravenously and getting weaker from the infections in his blood, bone, spinal cord, colon, skin and eyes. We were desperate for answers, which no doctors in Mexico could give us. Dr. Nurko was kind and reassuring on the phone, so we made the trip to Children’s within days. We arrived in September of 2000 with two bags, a stroller and a very sick 16-month-old.
From the moment we entered Children’s, everything was different from what we’d experienced in Mexico. The nurses were skilled, efficient and compassionate. The doctors treated us respectfully and worked to make sure we understood them. We felt safe. It was the beginning of an amazing journey.
A team of gastroenterologists, infectious disease specialists, dermatologists, immunologists and radiologists stabilized Andy. After several months, immunologists diagnosed him with a rare genetic disease. I marveled that out of the 20,000 genes in the human body, they were able to pinpoint a mutation on one called NEMO that was causing Andy’s immune system to fail. Knowing the disease’s genetic roots enabled them to understand the infection, and they prescribed medications to keep him alive.
Getting the diagnosis was good news, but the bad news also came: Andy had a fatal disease. About 15 cases of NEMO mutations were known world-wide, and most of those children died. Our only chance to cure him was through a bone marrow stem cell transplant. The best chance to get that donor was through another baby; we could use her or his umbilical cord blood, which is rich in stem cells that could give Andy a functioning immune system, for the transplant.
We knew we’d do whatever was necessary to save our son. Besides, we’d always wanted more children. But it was a long process that spanned two-and-a-half years and required four unsuccessful in-vitro fertilizations. During these long years, Children’s doctors kept Andy alive using medications with risky side effects and he came close to death several times. It took all our strength to persevere. Finally, we got an embryo that was genetically compatible and free of Andy’s disease.
I cried when we learned my wife was pregnant. And no words can describe the moment when our beautiful, healthy daughter, Sofia, arrived in 2004. Andy was 5 and enchanted with his baby sister. But one big hurdle remained. Andy’s immune system had to be destroyed by chemotherapy before a transplant of Sofia’s cells could rebuild his blood-producing bone marrow. Many of the doctors we met knocked on wood for good luck, but none like transplant specialist Sung-Yun Pai, MD. When she described the bone marrow transplant procedure to us, she must have knocked on wood 10 times. All we could do was have faith in the best children’s hospital in the world.
Our faith wasn’t misplaced, and the transplant was a success. Sofia’s umbilical cord stem cells now reside in Andy’s bone marrow and her immune system is a part of his. Today, Andy is a healthy 10-year-old who puts up with a lot of pestering from his little sister. Andy smiled when I told him I was going to work at Children’s. "Will you wear one of those blue vests?" he asked. He pictured me as a volunteer.
My job at the Trust—expanding Children’s fundraising market—is one of the most gratifying things I could do. I’m especially excited about our new Milagros para Niños campaign because it’s a way for the Latino community to participate in this incredible cause. And as I meet more patients and their families, I get to see that our family story is only one of thousands that unfold here every day.
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