Windham Lee Jr. is COTR Special Child
Windham Thomson Lee Jr. of Demopolis will be the Special Child for Christmas on the River 2012. COTR organizers made the announcement via a release Monday.
The son of Windham Lee Sr. and Teila Lee, this year’s Special Child was born April 13, 2006 at DCH Regional Medical Center in Tuscaloosa and immediately required respiratory resuscitation and life support.
“the cause of his breathing difficulty was not readily apparent to his doctors, but early on it was thought that his trachea (breathing tube) and his esophagus (feeding tube) were somehow connected, causing him not to be able to breathe,” Linde McAdams, Special Child committee chair, wrote in the release.
“He was a fighter from the start,” Teila said of her son. “The Neonatologist said he had never had a baby fight so hard to keep the tube out of his throat.”
Windham Lee Jr. continued his fight for two week at DCH before moving to UAB for an additional three months of treatment in the neonatal ICU.
“He had a tracheostomy from three and a half weeks of age until he was five years old,” Teila said. “Now, he still has frequent infections because of his narrow airway and difficulty coughing. When he was younger, and before he could talk, we used sign language to communicate. Since I am a Special Ed Teacher, and I knew how to sign, I taught him.”
After two years of extensive testing, specialists determined that Windham has Oral Facial Digital Syndrome Type I, a diagnosis doctors were hesitant to make given its serious nature.
“It’s a very rare syndrome, especially severe in boys – most of them don’t make it,” Teila said. “I think they just didn’t want the label on him. The doctors continually remind us that they treat the patient, not the syndrome itself.”
A Web MD description of the diagnoses reads that “Oral-facial-digital syndrome (OFDS) is an umbrella term for at least 10 apparently distinctive genetic disorders that are characterized by defects and flaws in the development of the structure of the oral cavity including the mouth, tongue, teeth and jaw; the development of the facial structures including the head, eyes and nose; and the fingers and toes (digits); along with differing degrees of mental retardation. The presentation of signs and symptoms is extremely varied, making diagnosis difficult. OFDS Tipe I is the most common of all of these disorders, and it is quite rare.”
Fortunately for Windham, his airway and jaw matured enough by the time he was five years old that he did not require restorative surgery. His developmental delays and speech delays, however, do require speech therapy, occupational therapy and physical therapy. He receives these therapies at Westside Elementary School where he is a student in Becky Holley’s first grade class.
“Windham is very special to us,” Holley said. “The other children love him.”
“When it comes to Windham, we have gotten excellent support from our families, our community, our church and the school system in Demopolis,” Teila said.
Windham and his family will be recognized as par of the Christmas on the River festivities on the fron lawn of Bryan W. Whitfield Memorial Hospital during a ceremony that begins Wednesday, Nov. 28 at 5:30 p.m.