Adeline's Story 

Each year, Children’s Miracle Network (CMN) Hospitals selects ten patients to represent the impact of its 170 member hospitals. Local Duke Children’s patient, Adeline, has been selected to serve in this role in 2024. Adeline and her family will attend special events throughout the country representing CMN Hospitals, meeting with corporate partners, and sharing her personal story. 

When Adeline was born, her heart experienced arrhythmias. Her doctors weren’t overly concerned, but as a precaution they sent Adeline for additional screenings at Duke Children’s. At Duke, Adeline’s family received a staggering diagnosis. 

Dr. Salim Idriss, a Duke pediatric electrophysiologist, diagnosed Adeline with Long QT Syndrome (LQTS), a rare and sudden arrhythmic death syndrome that is difficult to detect because the first symptom is usually death. Had it not been for Duke, chances are Adeline’s parents would have brought her home thinking she was healthy, only to find her dead in her crib one morning.

LQTS isn't curable, but it can be managed. Dr. Idriss put Adeline on a strict medication regimen. She also had open heart surgery when she was seven days old to implant a therapeutic pacemaker

Dr. Idriss’s news didn’t stop with Adeline. LQTS is a genetic disease, and because Adeline had it, it meant one of her parents did too. Based on his medical history, Dr. Idriss determined that Adeline’s father, Aaron, was the carrier. It was a miracle that he was still alive, and he was quickly connected with a Duke cardiologist to manage his LQTS. 


Because of Dr. Idriss, we can help protect Adeline so she has a much better chance of living a long, happy, healthy life. It’s miraculous, and it’s thanks to the incredible doctors at Duke Children’s. 

- Aaron Dinin, Adeline's Father

Aaron had unknowingly been living with LQTS his entire life. He realized that LQTS had been silently killing people in his family for generations. If not for Adeline, the same fate likely would have happened to him. Adeline wasn’t only Aaron’s first child, she ended up being his guardian angel.

Today, Adeline is a happy and energetic elementary school student. She enjoys arts and crafts, her favorite subject is science, and she musical theater. 

Despite facing this difficult disease daily, Adeline and her family stay positive and enjoy life to the fullest. While Adeline’s LQTS will never go away, her family has the tools, knowledge, and access to medical treatments that will keep her on track for a long, happy, and healthy life. That’s all been made possible thanks to Dr. Idriss and the incredible providers at Duke Children's, your local Children’s Miracle Network Hospital. 


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