BY LISA WARREN
Celebrating a first Christmas and first birthday are two major milestones in any baby's life.
For little Brilen Jenkins, however, both feats will be downright remarkable.
Brilen was born Dec. 27, 2012, suffering from an extremely rare disorder called trisomy 13.
Also called Patau syndrome, this chromosome disorder occurs when the affected person has three copies of genetic material from chromosome 13, instead of the usual two copies.
According to the National Institutes of Health (NIH), the disorder is associated with severe intellectual disability and physical abnormalities throughout many parts of the body.
Trisomy 13 occurs in about 1-in-16,000 newborns. Most babies born with the disorder often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes, extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone, the NIH says.
Due to the presence of several life-threatening medical problems, many infants with the disorder typically die within their first days or weeks of life, according to the NIH.
When Brilen was born, he was only given a 5 percent chance of survival, his mother said.
"Most babies suffering from this disorder are typically stillborn," she said.
Brilen was born last Dec. 27 at Takoma Regional Hospital, and six hours later, he was transported to Holston Valley Medical Center.
Two days later, he was transferred once again, this time to East Tennessee Children's Hospital in Knoxville, where he remained hospitalized for four weeks.
Brilen has been in-and-out of hospitals for much of his life.
"We've been hospitalized to Niswonger Children's Hospital in Johnson City at least 10 times," his mother said.
His last hospitalization occurred in early November and lasted for 10 days.
Since his last hospital stay, though, Brilen has been at home for a record length of time, his mother said. And she hopes it will continue through Christmas and his birthday.
Despite his major health hurdles, including the requirement of a feeding tube, Brilen continues to beat the odds -- often with a smile on his beautiful face and a determination that often amazes his health care providers.
His parents give full credit to his caring providers, to prayers and to God for how far their son has come and for what he has accomplished. And they look forward to helping him celebrate his first Christmas on Wednesday and his first birthday two days later on Friday.
"Brilen is definitely a Christmas miracle," his mother said.
Persons who would like to send birthday wishes to Brilen and his family can do so at the following address: Brilen Jenkins, 1027 Old Knoxville Highway, Greeneville, TN 37743.