Busby is COTR Special ChildBy Staff Reports Published 2:37pm Thursday, December 2, 2010
By Linde McAdams
COTR Special Child Committee Chairman
Introducing the Special Child for 2010 Christmas on the River: Martha Rhae Busby.
She is the daughter of Dana and Jay Busby—sister of Aiden Busby.
Rhae, as her family calls her was born April 9, 2008. “We all knew she was special before she was born” stated her mother. “She had a routine ultrasound and an abnormality in her bones was found. Early on we weren’t sure she would live, but she is a fighter. Rhae has Osteogenesis Imperfecta (OI) and to date has had over 100+ fractures and 6 surgeries.”
Osteogenesis Imperfecta is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. There are at least four recognized types of the disorder, representing extreme variation in severity from one individual to another. For example, a person may have just a few or as many as several hundred fractures in a lifetime.
It is estimated that there are about 20,000 to 50,000 people with Osteogenesis Imperfecta in the United States. The characteristics features of Osteogenesis Imperfecta vary greatly from person to person–even among people with the same type of OI, and not all characteristics are the same in each case.
In recent years, the medical treatment of osteogenesis imperfecta (OI) is with the medications bisphosphonates, a family of drugs with proven potential for decreasing bone destruction. Although widely used in adult bone disease, this class of drugs had not been extensively used in children but now its use has increased. The medication is given intravenously as it is not absorbed by the gastrointestinal tract. Rhae has been taking the bisphosphonate therapy since she was 29 days old.
“She is developmentally nearly right on tract, but she has set-backs whenever she has a new break or needs surgery” stated Dana. When asked how she personally deals with her fear of new injury she immediately responded. “It was very difficult and we were under a lot of stress. What helped me the most was the day that I gave her over to God and he cares for us all! Rhae is a joy and a blessing to our family.”
I invite you to introduce yourself to the Busby family during our Christmas on the River celebration. Be sure to wave to Rhae as she passes by in the Christmas on the River Children’s Parade. She will be featured in her own float, as she is this year’s most Special Child.