13 month old infant dies from ARDS after a bone marrow transplant

Cold overwhelms baby with medical problem Community was pulling for 13-month-old boy with a rare disorder. But the baby who loved music and dancing, in the end, was killed by a cold. By Andrea Sudano Daily Breeze
Nicholas Burns, the El Segundo infant whose battle with a rare and deadly immune disorder sparked an outpouring of community support, has died.
He was 13 months and 25 days old.
Surrounded by family and friends at the Mattel Children's Hospital at UCLA, Nicholas died of respiratory failure Tuesday, said his father, Dave Burns.
Nicholas developed acute respiratory distress syndrome after an otherwise successful bone-marrow transplant to fight hemophagocytic lymphohistiocytosis, or HLH, a disorder that causes disease-fighting histocytes to wreak havoc on healthy tissue.
Diagnosed with HLH in late April 2004, Nicholas underwent a bone marrow transplant in December. He recovered nicely, his body regenerating its immune system and defeating HLH.
But in the end, a cold killed the baby who loved music, dancing and smiling, Dave Burns said.
"He just picked up a bug," he said. "We don't know. He was being treated for a minor (problem) regarding his medication. He just got sick."
Released from the hospital in mid-January, Nicholas re-entered the facility on Feb. 22 and remained on a ventilator until Tuesday, said his mother, Stephanie.
News of Nicholas' initial diagnosis prompted a rally of support in close-knit El Segundo as well as throughout the South Bay, with people organizing various blood drives and fund-raisers.
Diane Wride, a colleague of Dave Burns at the El Segundo Fire Department, helped coordinate efforts to make improvements at the Burns' home in anticipation of Nicholas' homecoming.
"(The news is) devastating with everything he's been through," she said. "He beat all the odds. It was never a possibility in my mind that he wouldn't make it."
Throughout Nicholas' fight, the couple was astounded by the community outreach, which ranged from emotional support and encouragement to donations toward medical bills totaling nearly $3 million, Stephanie Burns said.
"There's nothing that makes the loss of your child easier, but I certainly wouldn't want to walk down this road without the support we have," she said. "I know we are lifted and carried by hundreds of people around us that only want to do whatever they can."
Memorial services for Nicholas have not yet been finalized.
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