Addelyn Farah
- Elliana's Army
- Jan 10
- 2 min read
Born on September 15, 2024, to parents Serenity and Austin, Addelyn Elizabeth Farah was diagnosed with Junctional Epidermolysis Bullosa (JEB) with pyloric atresia. Pyloric atresia is a closure or blockage at the exit of the stomach, preventing food from reaching the small intestine. Although extremely rare, when pyloric atresia is present, it is commonly accompanied by EB.
Some of Addelyn’s treatment for pyloric atresia included removing air and mucus buildup from her stomach and providing nutritional support via a PICC line. Due to her EB, Addelyn’s care team had to carefully plan, and even delay, the delicate surgery needed to address the blockage, as the procedure carried a high risk of causing internal wounds. While Addelyn had some external skin erosion, it was very mild; her internal mucosa was the most severely affected.
During the months they had with Addelyn, her parents were her biggest advocates, and she gained quite a following at the hospital. Her primary nurses became family, and Serenity and Austin became the go-to guides for all things Addy. Anyone who entered her room did so with caution, always checking with them first. She quickly stole hearts with her long eyelashes, curly hair, cheery smile, and chubby cheeks. Addelyn had everyone wrapped around her fingers and earned the phrase, “Cuddles or I’ll Cry.”
Addelyn loved being rocked, playing with her toys and playmat, watching her contrast mobile, and listening to many, many books. Addelyn’s best friend in the hospital was her IV tower, affectionately named Tommy Tower. She loved to stare at it and listen, and if anyone dared touch it, she made sure to supervise closely.
Internal blistering of her intestines as a result of surgery ultimately caused Addelyn to succumb to her EB. After a day surrounded by family and loved ones, feeling snow, sand between her toes, and
enjoying a short car ride, Addelyn passed away on February 14, 2025, at 4 months, 30 days. Addelyn's life and memory continue to be the driving force behind her parents’ fight for a cure for JEB-PA.
