‘225’: A local family rallies around daughter with Rett syndrome

In the chill hours after she came into this world one short December day, they called Riley Hooper their “Dream Baby.” While the other infants born around her screamed, filling the hospital hallways with wet, newborn cries, Riley, beautiful daughter of Jeff and Kelly Hooper, took in the world with big, saucer eyes and snuggled in, calm as “Silent Night.” Soon they called this baby girl “Smiley Riley.” And the best probable future flowed out before the Hooper family like a clean, blue cloth. They had three beautiful, healthy children. They had a strong faith. They were blessed beyond measure. Riley hit all the usual milestones in her first few months. Rolling over. Finding her feet. Sitting up. Crawling. Getting her first tooth. She babbled and cooed. She seemed to say “duck” and “cup.” She wore that smile like a halo. And then everything seemed too still. “When she was a year old, she was nowhere near walking,” Kelly Hooper recalls. “I thought, ‘She’ll do it. Give her time.’ ” Eventually Riley took a few steps, but it had become clear something was wrong. A visit with Baton Rouge pediatric neurologist Charlotte Holman confirmed there was some sort of problem. Two months and several tests later, just before Christmas, Dr. Holman delivered the life-altering diagnosis: Riley tested positive for Rett syndrome, an incurable neurological condition usually found in females. At age 2, Riley would start to regress. Read the complete story by Amy Alexander in the current issue of 225 here.