Carter's Story
Carter Kim, also known as, Carterman, was born a healthy baby boy on May 18th, 2020. Smiling from day one, his first year and a half of life was just like any other little boys’. He loved playing with his toy animals, tractors, being outside, and of course, picking on his big sister, Mia. Around a year and a half old, we started noticing things were changing with his development. His hand movements became ataxic, and his walking wasn’t progressing. Thanksgiving week of 2021, he began seeing Dr. Lulla at Boystown Neurology and started PT, OT, and speech therapy.
The night of February 7th 2022 changed our lives forever. While he was asleep, he began having seizures. They were occurring every five minutes and lasting up to a minute at a time. We went by ambulance to the ER, and after a few hours, they were finally able to stabilize him. EEG testing showed abnormal brain activity, and he was started on anti-seizure medications. Dr. Lulla suspected a mitochondrial disease so genetic testing and a brain MRI were ordered. The first round of genetic testing showed the possibility of a NARS2 genetic defect. NARS2 is an extremely rare degenerative disease with no cure. We asked if he would live to be school age. Quietly, the genetic counselor and doctor responded with, “We can't promise that he will.” Tears came pouring out of our eyes while we watched Carter chase a little silver car all over the clinic's floor.
Things would never be the same as his abilities rapidly began to decline. Within a few months, he went from being able to cruise along furniture and play with his toys to being unable to sit up or even hold up his own head. That same year, he had surgery to put in a feeding tube, and by the end of the year, he was using oxygen almost daily.
After 2 years of taking trips all over the country to see mitochondrial specialists and multiple genetic tests, he was officially diagnosed with a NARS2 genetic defect. Due to the rarity of the disease, getting an accurate prognosis was nearly impossible; however, we all knew his time on earth was likely very limited. Before we knew it, we were practically a functioning hospital in our own home.
For the next couple of years, there were countless hospital stays and ER visits, multiple surgeries, more doctor visits than we can count, and numerous medication changes all in efforts to manage this awful disease.
Through all the ups and downs, Carter never lost his greatest strength, his smile. His disease continued to knock him down, making it harder and harder for him to do even the simplest things like watch his sister play dress up with him or knock over a stack of his favorite foam blocks. No matter how difficult things were, it never seemed to affect the joy he had or the joy he brought to other people. During his many hospital stays, it’s no exaggeration to say that everyone who cared for him, commented on how he was always smiling. Every person that met him, truly walked away happier. He lived absolutely every day to its fullest and never wasted one breath.
In the summer of 2024, Carter's demeanor began to dramatically change, and his overall health declined significantly. The disease had become more than his body could handle. On September 7th, 2024, Carter passed away peacefully in his favorite place, his sister’s arms.
