Author: Shannah HudsonPatient or Advocate: Emmalyn HudsonDisease Affiliation: Glutaric Aciduria/Acidemia Type 1
Emmalyn Reese Hudson graced us with her presence 8 years ago at 35 weeks gestation weighing in at 5 lbs, 7 ozs. and 18 in. long. Our beautiful baby girl was so tiny, perfect, and seemingly healthy, and I couldn’t believe how blessed I was to be her mom. On our second night at home around 10:30 pm, we received THE devastating phone call that no parent ever wants to get. In an instant, our new baby bliss turned into sheer panic, fear, and grief. That moment, one I will never forget, is when our daughter became a brave and fearless Rare Disease warrior. The next couple weeks were a blur of tears mixed with overwhelming fear, uncertainty, anger, devastation, and immense heartache. After 8 days in the Children’s Hospital, we took our baby girl home with a scary diagnosis of Glutaric Aciduria/Acidemia Type 1 (GA-1). Looking back now, the worst phone call we ever received will also be the best call of our lives in that it was what saved Emmalyn’s life because of Newborn Screening.