Doug and Tracie Nicoll had two reasons to celebrate Tuesday: Their 2 1/2-year-old son, Douglas, was finally admitted to a North Carolina hospital for a procedure that could save his life, and their other son, Cameron, celebrated his first birthday.
Both Colorado Springs boys, who suffer from a rare genetic disease called Sanfilippo syndrome, have been in Durham, N.C., since mid- October. Their parents sought help from Duke University Medical Center - the only place that offered them hope for their sons.
The boys are missing a crucial enzyme that breaks down sugar molecules, called mucopolysaccharides. Without the enzyme, their bodies are storing the molecules, and the slow buildup is causing irreversible damage to the brain and other organs. The syndrome affects 1 in 70,000, and death usually comes by the midteens.
The Nicolls and a handful of other families with Sanfilippo children are optimistic the transplant procedure - nine days of chemotherapy followed by an infusion of stem cells from umbilical cord blood - will stop the disease from progressing.
Douglas was admitted to the children's transplant ward Tuesday afternoon; he is scheduled to begin chemotherapy this morning.
"He's in Room 5209 - my lucky number. It's gotta be, right? Those are my lucky numbers now," said Doug Nicoll, 36.
"We couldn't wait to get on (the ward), and now we're on there. It's exciting, yet we're scared to death."
The chemotherapy, which will cause hair loss, swelling and mouth sores, is the most dangerous part of the procedure.
Both boys were supposed to be admitted in late November, but there were no beds available on the children's ward. Doug Nicoll said he doesn't know when Cameron, who spent much of his first birthday in his brother's hospital room, will get a room.
Douglas and Cameron will spend up to two months in the hospital after receiving transplants.
The Nicolls, like other Sanfilippo families at Duke, have a Web site (www.caringbridge.com/co/nicollbrothers) where people can post messages to the family and get updates about the boys. People throughout the Pikes Peak region have been following the family's story.
The Web site has been uplifting, Doug Nicoll said.
"It's what keeps us going - to see all the wonderful remarks from people who sign the guest book and wish us well," he said. "It's our highlight to go and read that."
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