9-year-old Always with Essential AED

Nine-year-old Adeline Evelyn Dinin is rarely seen without her automated external defibrillator (AED). It accompanies her to school, dance classes, Girl Scout meetings, and playdates. This life-saving device is essential for Adeline due to a heart condition she was born with, which poses the risk of her heart malfunctioning unexpectedly.
Adeline’s parents, Alessandra and Aaron Dinin, discovered their daughter’s heart issue on her very first day of life, necessitating a surgery by the seventh day. Despite her condition, Adeline’s life is largely normal, apart from the constant presence of her AED, humorously referred to as “AED’s AED” due to Adeline’s initials chosen prior to the discovery of her heart problem. This inside joke extends to their routine familial exchanges, often asking, “Do you have the AEDs?” when planning logistics.
Adeline’s unique initials have also inspired her online persona, @AED__Girl on social media, created to promote awareness regarding her condition and to support the hospital in Durham, North Carolina, that treated her initially. In 2024, she was named a National Champion by Children’s Miracle Network Hospitals, serving as an ambassador for pediatric health care.
With over 4,000 followers, Adeline finds joy in creating engaging content, including videos where she dances to music while emphasizing the importance of knowing where AEDs are located. Her posts also aim to educate people on CPR and the significance of AEDs, particularly raising awareness for long QT syndrome, the specific condition she battles.
Her influence extends internationally, with people reaching out for support. While unsure if her advocacy has directly saved lives, Adeline’s condition has inadvertently impacted her father, Aaron. During Adeline’s birth, nurses noticed irregularities in her heartbeat, which led to a diagnosis of long QT syndrome, an electrical disorder causing potential life-threatening arrhythmias.
Further family investigation revealed Aaron’s grandfather had similar unexplained health issues, and Aaron himself had experienced fainting spells previously dismissed. Adeline’s diagnosis prompted a genetic review confirming both Aaron and his father carry the same gene, bringing clarity and preventative treatment into their lives.
Both Aaron and Adeline started medication to regulate their heart rhythms and manage blood pressure. These treatments initially carried a heightened concern over household noises potentially triggering cardiac arrests. However, persistence with regular medical checkups and precautions such as Aaron opting for an implantable cardioverter defibrillator have enabled the family to return to a worry-free daily life.
Adeline’s bravery and her father’s proactive approach have allowed the Dinins to maintain a happy life, only limiting extremely startling activities like certain amusement rides. They focus on the importance of participation in regular pursuits, ensuring Adeline’s condition is respected without hindering her experiences.
As they look to the future, Adeline and Aaron will require new devices as their current ones age. Adeline is expected to upgrade her AED post the age of 10, with doctors vigilantly monitoring her, through life changes that could impact her heart.
For the Dinins, Adeline’s early diagnosis has been a blessing, giving them time to implement supportive measures essential for her continued well-being. They express deep gratitude towards the medical team that has secured Adeline’s safe journey from birth alone in the nursery to her present healthy lifestyle.