One thing I have learned from having a child with a rare disease is not all super heroes wear capes.
Emmalyn is 11 years old and has a rare genetic metabolic disorder, Glutaric Aciduria/Acidemia Type 1 (GA-1). At only six days old, Emmalyn’s life was saved by expanded Newborn Screening in Mississippi and the quick response by her medical team. One thing I have learned from having a child with a rare disease is not all super heroes wear capes. I am continuously amazed at the bravery and courage my daughter has while living and loving life with a rare disease. Her rare disease diagnosis and journey does not define who she is but will influence who she will become by providing value to her character in teaching her to love more deeply and live more fully.
