Callie was born Feb. 5, 2009, our fourth baby and our only girl. Even our youngest son, who was 15 months old, doted on our new arrival.

Within two weeks of her birth, we noticed Callie wasn’t eating properly. She would suck her bottle, but would take over an hour to get half an ounce of milk.

Assuming this was just a typical feeding issue due to a slightly premature birth, we bought a fast-flow bottle, sat Callie upright and put a little milk in her mouth and allowed her time to swallow it. This is how we fed her for most of her infancy. We didn’t know it at the time, but those feeding issues were an early sign of SMA.

As Callie approached her first birthday, we noticed she didn’t kick her legs anymore and wouldn’t put weight on them. She could maintain a sitting position and roll across the room to get toys, but she showed no signs of crawling or pulling up.

Callie started physical therapy, and we started trying to find out what was causing her physical weakness. A month later, when a neurologist examined her, he did not get reflexes in her legs. We left his office knowing something was seriously wrong.

After reading about the possible diagnoses the neurologist mentioned, it seemed clear to us that Callie had Spinal Muscular Atrophy (SMA). A week later, an electromyography and nerve conduction velocity (EMG/NCV) test confirmed our fears.

At the time of her diagnosis, Callie could eat well, sit when placed and roll across an entire room.

By her second birthday, Callie had lost virtually all her ability to sit unsupported, her ability to roll over and her ability to eat properly. She had a feeding tube placed to keep her properly hydrated.

By 2016, when the FDA approved Spinraza, the first treatment for SMA, Callie’s body had already been ravaged by the condition. She tried Spinraza but each spinal injection put her life at risk and cut deeply into her quality of life.

As the years passed, Callie depended more and more on bi-pap for breathing support, and her body lost its ability to sit unsupported. Scoliosis twisted her spine and made breathing and sitting up even more difficult. 

But Callie loved making friends. She talked almost non-stop. She enjoyed watching movies, creating her own comic strips, painting, playing video games, and eating thin-crust pizza.

A couple months after her 12th birthday, Callie told us she was too tired to keep going. She felt like she would not be able to live much longer and said she was ready for Heaven.  

Two weeks and two days later, after several days of physical decline, Callie died peacefully in our arms on Sunday morning, April 18, 2021.