Smyrna Girl Rides in Parade to Raise Awareness for Genetic Disorder

This past Saturday, Children’s Health Care of Atlanta hosted its 31st annual Children’s Christmas Parade. When asked to ride alongside Glenn Burns, chief meteorologist for Channel 2 Action News, in a 1941 Cadillac in the parade, 11-year-old Heather Farmer of Smyrna was thrilled to participate. However, for Heather, this was much more personal than simply celebrating the Christmas Season as part of an Atlanta tradition.  

CHOA has been a valuable resource to Heather and her family for the past 10 years. Just before her first birthday, Heather was diagnosed with Ectodermal Dysplasia, a genetic disorder that involves defects to the hair, nails, sweat glands and teeth.  

Ectodermal patients are often characterized by very sparse, light, thin hair and thin, pale skin. Many individuals, like Heather, cannot perspire because their sweat glands function abnormally, if at all. Over heating is often a common problem for patients. There are more than 150 different kinds of ectodermal dysplasias with symptoms ranging from mild to severe.

Heather has become involved with the National Foundation for Ectodermal Dysplasias to create awareness for her disorder and has met other adolescents her age facing similar challenges. Doctors estimate that seven of every 10,000 babies born will be affected by an ectodermal dysplasia. Despite ongoing research, there is still no cure for the disorder however doctors strive to learn more about the genes that cause the disorders. 

Heather is currently a student at in Smyrna in the sixth grade. Growing up with ectodermal dysplasia is not easy, however Heather has a “can do” attitude and will participate in as many activities as possible along side her peers. The summer months can be challenging but she and her family feel blessed to have access to top pediatric doctors right here at Children’s Healthcare of Atlanta.