Parry Romberg Syndrome Awareness Brought To St. Bernard School

Alivia McKay brings Parry Romberg Syndrome Awareness to St. Bernard School

To wrap up their science unit on genetic disorders and diseases, on Friday, December 15th, St. Bernard School hosted eleven year old Alivia McKay to discuss Parry Romberg Syndrome with Ms. Brooke Landry’s 7th grade class. Parry Romberg Syndrome is a rare autoimmune disease that affects approximately 1 in 500,000 in the world. Alivia was developing as a normal toddler until the age of 3 when a mark on her face resembling a bug bite would not go away. After several different doctors, hospitals research and tests, Dr. John Siebert at the University of Wisconsin Medical center in Madison, Wisconsin finally diagnosed her with the disease. The symptoms of Parry Romberg Syndrome include loss of tissue, muscle and bone in half of the face, eye diseases, orthodontic issues, facial pain, brain lesions, migraines, seizure disorders and more. Alivia explained how this syndrome has affected her life and her health, and the medications and surgeries she has undergone to slow down the progression. She brought in a power point presentation along with personal photographs, and took questions from the 7th graders afterward. Her next surgery is scheduled for the day after Christmas, and she will update the class as to her progress. At the end of the presentation, the class presented her with a check in the amount of $600.00 that was raised for the Ronald McDonald House, an organization instrumental in her care.

Photos Submitted:

1.Alivia McKay speaks of her personal experience with Parry Romberg Syndrome, a rare auto immune disease that can have sudden onset at any age.

2. Ms. Landry’s class asks Alivia questions about the disease, medication, her family, her surgeries and her school work.

3.Grade 7 presents Alivia with a check in the amount of $600.00 for the Ronald McDonald House, an organization instrumental in her care.