Alex and Aaron Haas had heard of spinal muscular atrophy (SMA) — a former neighbor of Aaron’s had a grandchild who died from it — but didn’t know much about it when 3-month-old Riley seemed less active than a family friend’s baby of the same age. A small knot in the back of Riley’s neck…
The day before Thanksgiving 2018, the Howell family was traveling from Louisville to Frankfort to visit relatives. During the drive, 4-week-old Brooks started crying. It was the beginning of the family’s journey with the rare disease spinal muscular atrophy with respiratory distress, Type 1 (SMARD1). “It was a very different cry,” said Jessica Howell, Brooks’…
Lindsay Rogers and her husband, David, tried for 16 months to get pregnant, including three cycles of fertility medications. As she considered whether seeing a fertility specialist might be the next step, she became pregnant with their son, Liam, in March 2018. Lindsay describes the pregnancy up to 20 weeks as completely normal. After hitting…
Two years ago, 16-year-old Grant Oller had a slight cough the morning after attending a dance with friends. The cough got worse, and after he felt exhausted and developed a sore throat, he went to his pediatrician. His oxygen levels were so low that his pediatrician admitted him to a local hospital in Owensboro. The…
When Dana’s daughter, LeAnn, was born at 25 weeks, she weighed 1 pound, 10 ounces. Born more than three months early, LeAnn was so fragile she couldn’t be held or even taken out of the incubator for a week, and her skin looked almost see-through, her mother recalled. LeAnn would spend months overcoming one health…
When Molly Knott was 2, the toddler took a spill in the kitchen and her mother reflexively scooped her up, grasping her under her arms. That’s when she first noticed a lump under Molly’s left armpit. Molly said it hurt. A bug bite probably, right? As it got a little bigger, it still wasn’t clear…
Grace Hatfield seemed to be developing like a normal toddler. She was walking, talking and interacting with family. But as she approached 15 months, her development seemed to start going in reverse. “Grace began losing words,” said Kim Hatfield, Grace’s mom. “Then, while talking to her, she’d start to zone out — just staring at…
Heather Kays was a 12-year-old girl newly diagnosed with acute lymphoblastic leukemia when she was a cancer patient at Norton Children’s Hospital. Now, as a 23-year-old healthy woman, she is on the staff as a patient care associate in the hospital’s Addison Jo Blair Cancer Care Center. As she cares for children undergoing treatment with…
Kara Ainsley is a registered nurse at a rehabilitation facility in Bowling Green, Kentucky. She can tell when things are going smoothly and when they aren’t. After a relatively uneventful pregnancy, she labored the morning of May 31, 2015, at the local hospital. If there was anything unusual about her labor it was the duration…
Trent Robinson was rushed to Norton Children’s Hospital by ambulance from a nearby hospital just after being delivered by emergency cesarean section in March 2018. “He was turning blue. I got to see him for a split second as I was lying on the operating table,” said Brooklynn Robinson, Trent’s mother. Trent was diagnosed with…
To look at Samantha Stallings today as an active, working adult, you would never know that she’s been fighting for her health all 27 of her years. Her journey with Norton Children’s began the day she was born six weeks premature and transferred to the neonatal intensive care unit (NICU) at Norton Children’s Hospital. Now…
Ace Graham soon will celebrate his second birthday, an accomplishment that most families take for granted. But for his parents, T.J. and Allie Graham, and his extended family, each day is a blessing, and nothing is taken for granted. Ace was born March 22, 2018, and everything appeared fine. He was healthy, and within a…