Quinn H.

Born on November 28, 2012, Quinn passed away on October 25, 2013, after succumbing to Aicardi-Goutiérres Syndrome.

Quinn was born an apparently healthy, six-pound, two-ounce baby who was, her parents say, “sweet and alert but also sometimes demanding.” When she was two months old, she “began to cry continuously and inconsolably, sometimes lasting 18 hours a day.” By four months, she had lost the ability to “breastfeed or suck from a bottle. It got to the point where she was being fed by dripping milk into her mouth with a syringe.” When she was six months old, Quinn began suffering seizures every 30 minutes. Only after getting the seizures under control were doctors finally able to diagnose her with AGS, an extremely rare condition affecting some 200 people worldwide.

Over time, Quinn “lost her vision as well as the skills she had learned and developed since birth.” Her parents worked with therapists to help Quinn “learn to shake a rattle, grasp a ball, roll to her side, and eat baby food.” She was making good progress in her therapy until she took a sudden turn; her heart failed, and she passed away.

Among her parents’ memories of Quinn: “She loved to be touched and held. She was instantly comforted by being snuggled by her loved ones. She loved to be sung to and to hear stories. She had eclectic taste in music—she enjoyed everything from Metallica to the Beatles.”