In our inaugural issue, we introduced you to Carter Berlin (One Tough Ten Year Old, Spring 2021), a young man who lives with a rare chronic autoimmune disorder. Three years later, Carter is still a regular visitor to Monument Health for infusion treatments.
What’s changed the most since he became a regular visitor to the Pediatric Unit is Carter himself. He has grown since being diagnosed at age 4 into a good-natured and humorous teenager who enjoys pepperoni pizza and roller coasters.
At 13, Carter is in a typical phase of discovery. He loves video games and horror movies, is getting interested in music and has been trying new sports like basketball and soccer. He bowled on a team with his older brother Mason, 15, in the Special Olympics state tournament recently.
“I like playing sports because you get to socialize and compete,” Carter said. “That’s what makes me feel excited; just getting to do fun things that make me feel like a normal kid.”
A diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) was the beginning of a new journey for Carter and his parents, Heather and Ryan, in treating and managing the condition. At 4 years old, Carter began to stumble and fall frequently. That’s when his parents first became concerned. As things progressed he lost the use of his limbs and large motor functions at times. Carter’s CIDP causes his body to attack his myelin sheaths, the fatty coverings that protect his nerves. Carter was first diagnosed and given Immunoglobulin (IVIg) therapy treatment at Mayo Clinic.
At Monument Health, the Rapid City Hospital team works closely with Carter’s care team at Mayo Clinic to carry out his plan of care closer to home. He comes in several times per month to receive infusions through an IV port in his chest. It’s a long 6-hour day when taking infusions, but he breaks it up by gaming and reading. Physically, Carter has ups and downs dealing with CIDP. Some days he has more energy and endurance than others. He is enrolled in physical and occupational therapy to help him stay active.
“I would describe myself as someone who wants to make everyone laugh and tries his best to be nice.”
- Carter Berlin
Carter shared that he has recently been diagnosed with autism, something he says has informed his perspective about his CIDP, adolescence and life in general.
“It makes me feel like what I’m going through is more normal, and I understand why I feel awkward sometimes,” he said.
Carter goes to middle school half days and enjoys reading and math. He says he enjoys the way math gets his brain working in problem-solving mode. His dad says he is proud of Carter for learning to live day by day and discovering things he is passionate about.
“Carter is a trooper. He’s been through a lot,” Ryan said. “What he can do any day just depends on how he’s feeling, but he pushes himself really hard to get through the day and to be able to do the things he enjoys.”
He has been billed in these pages as a tough guy, and rightly so, but Carter just wants to make you smile.
“I would describe myself as someone who wants to make everyone laugh and tries his best to be nice.”
Story and Photos by Bob Slocum
Read our origal coverage of Carter's story here.
