Carter's Story
Carter Kim, also known as Carterman, was born a healthy baby boy on May 18, 2020, to Alex and Jacque (Sloth) Wagner. Smiling from day one, his first year and a half of life was just like any other little boy’s. 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 changes in 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 7, 2022, changed our lives forever. While he was asleep, he began having seizures. They occurred every five minutes and lasted up to a minute at a time. We went by ambulance to the ER, and after a few hours, they could finally 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 revealed 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, and quietly, the genetic counselor and doctor responded, “We can't promise that he will.” Tears poured from our eyes as 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 cruising along furniture and playing with his toys to being unable to sit up or 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 two years of traveling around the country to see mitochondrial specialists and undergoing multiple genetic tests, he was officially diagnosed with a NARS2 genetic defect. Due to the rarity of the disease, gaining 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, supported by a charitable organization that helped families facing similar challenges.
For the next couple of years, there were countless hospital stays, ER visits, surgeries, more doctor appointments than we can count, and numerous medication changes—all in efforts to manage this awful disease, made a little easier by the community support we received.
Through all the ups and downs, Carter never lost his greatest strength: his smile. His disease continued to knock him down, making it harder for him to do simple things like watch his sister play dress-up 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 remarked on his constant smile. Each person who met him walked away happier. He lived every day to the fullest and never wasted a single 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.
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The Carterman Foundation is a public 501(c)(3) nonprofit organization.
Our federal Tax ID or EIN is: 39-3916115