Jul 12, 2012 6:29 PM by Nicole Vandeputte
That Nickolas Coke survived a year, without a brain, was a miracle. Now, he is 3 and half. His mother Sheena Cardona says, "He has that special, special place that no one else can touch. Even if he wasn't here today, it would still be the same way."
The little boy from Pueblo suffers from Anencephaly. In his case, it means he was born with just a brain stem. He was expected to die at birth, but he didn't. There has been very little medical intervention since. A hospice nurse visits often. She takes his temperature, and measures him. He takes a few medications to ease the discomfort of seizures that happen very often now. But, Nickolas rarely ever sees a doctor. So far, there's not much they can do for him.
Nickolas really survives on will, and love. Sheena says, "I think the love and caring that everyone gives him is making him stronger, and making him live longer."
He's grown physically and emotionally, his family says. "There's times he's just lying there, and you go by and just touch his cheek, and he starts smiling like he knows you're there."
Gone are the days of keeping him isolated from the world. Nickolas is getting out. Among some of his outings, he's been camping, and to the Cheyenne Mountain Zoo.
But, that question always lingers. "I don't want to know when he's going to go," says Sheena. "I don't want anyone to tell me he has a year left or a day left. I don't want to hear it."
But, that question is hard to ignore as he suffers seizures during our interview. Sheena says she won't dwell on how much time is left. Instead she looks at each moment, thankful, for this time with her little boy. "There is so much that he's taught me," says Sheena as she tears up. "I couldn't sit here, and there's so many things this little boy has done. Not just for me, but for my whole family."
Hospice has really been the only medical help the family has used. In August they are taking him to a pediatric neurosurgeon to see if there is any more that can be done to keep him comfortable in the future.