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Zachary Nickerson, now 10 years old, was born with severe combined immunodeficiency disease (SCID), a life threatening disease, often referred to as "boy in the bubble syndrome," that causes you to have little or no immune system. There aren't many effective treatments for it, but the best one is a bone marrow transplant, and Zach had two of them by age 5.
But the chemotherapy that was part of the treatment Zach needed after the bone marrow transplants caused him to develop pulmonary fibrosis, a progressive lung disease that could only be cured with a double lung transplant. He suffered total respiratory failure and was in the ICU at Children's Hospital Boston from November 2007 to February 2008 before he could get on the transplant list. Zach then needed to wait until he was healthy enough for transplant, including being able to do physical therapy and function without being hooked up to a vent to help him breathe. So the Children's team decided to place a trach to assist with his breathing and allow him to move about freely. "He always is the one telling me not to worry," says, his mother, Michele. "He tells me everything will be fine and I just look at him and know that we will get past anything and there will be better days."
With so many health challenges, many people wonder how a family could stay so upbeat, but as his father, Lloyd, points out, "There are many people out there who have it a lot worse." Zach got his strength up and after two weeks on the transplant list, he received a life-saving double lung transplant at Children's on March 23, 2008, but his road to recovery has been long. He developed pneumonia after the transplant and was sedated for three weeks for pain management. But Zach fought back and did it with a smile on his face. "He has had health issues his whole life but he has the cutest smirk and still enjoys life," says his nurse, Cindy Campbell, RN.
Both of his parents admire Zach's strength. "Never once has he asked me why he has to go through all of this." says Lloyd. "He's entitled to his crumby days, but it doesn't take much to distract him and he stays positive."
Campbell credits Zach's parents' dedication to his success. "I've seen devoted parents, but not like this," she says. "They take shifts so he's never left alone. He's supported and loved every minute and they don't treat him like he is sickóthey let him play," she says. For their part, the Nickersons are grateful that Children's allows parents to be so involved. "The team really takes everything you say into consideration," Lloyd says. "They're so personable."
For now, he's recovering at his family's farm in Maine with his pet cow Cocoa, doing physical therapy, returning to Children's once a week to make sure his recovery is going smoothly. He has his personal goals set high, including wanting to play soccer in the fall and is looking forward to his favorite family activities, Jeep rides and camping. In the mean time, he is laughing pain-free at his favorite show, "America's Funniest Home Videos." "I can laugh out loud without losing my breath and laughter is the best medicine, especially after new lungs!" Zach said.
"C.J." Lisa
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