Cooper’s life changed from ordinary to extraordinary when he woke up from his afternoon nap paralyzed. He was 9 months old and left medical experts stumped and searching for answers and treatments.
Cooper is currently 3 years old, and was presumably affected by AFM in September 2018. However some medical professionals say even within this rare diagnosis, he presents with oddities that make it difficult to draw absolute conclusions. When people ask about Cooper and AFM, I feel like I don’t know where to start. Cooper’s story is hard to explain and sometimes it feels like there are no good answers. A lot of the time, we just say he is a medical unicorn. It’s kind of our family joke.
When we first heard Cooper had AFM, it was after we had already been in the PICU for a few months. His original diagnosis was botulism and then TM. I was confused more than anything because I had never heard of AFM before despite working in the Pediatric ICU for 5 years as a RN. Having his diagnosis seemingly change made me feel very uneasy as I was losing confidence in the medical system that I was relying on to help him through this. I felt angry that I didn’t know about this disease before it hit our family and frustrated that there was not more research or direct answers as to why someone gets AFM or how to effectively treat it. I also felt so helpless watching Cooper struggle to breath and unable to move.
AFM changed how Cooper’s body and mind work. Initially, he could not even hold his head up when laying at an incline. He also relied fully on a ventilator to breathe and a tube that ran down his nose into his stomach to feed him since he was unable to swallow. He required 2 surgeries; a tracheostomy in his airway so that he was more comfortable with the ventilator breathing for him, and a Gastrostomy Tube directly through his abdomen into his stomach so that we could feed him. All the medical equipment in our house and education we had to complete to safely bring Cooper home from the hospital and provide for his basic needs was very stressful and overwhelming for Cooper’s Dad and me at first. We struggled a lot the first year finding balance.
Shortly after Cooper got AFM, a lot of his bones started breaking during his regular activities. He had a total of 12 broken bones in the first 6 months. Now he gets medicine every 6 months to help his bones get stronger. This has really helped him to be able to participate in the therapy that will get his muscles stronger. Gradually, he learned to breathe without the vent and without all the same muscles that most people have. His diaphragm became extra strong to make up for the weaker muscles. Now when he breathes, it’s all belly breathing and he is really good at it. Also, he has learned to swallow small amounts of baby food but those muscles still get tired really fast so most of his food still goes through his tube in his stomach.
Cooper was very young when AFM stole a lot of his body’s sensation and muscle functions. He has a difficult time moving his muscles because he can’t feel them moving. Instead of exploring a lot like most toddlers do, Cooper has a strict “work-out” routine consisting of PT, OT, Feeding & speech therapy. We have to send intense levels of electricity through his body 4 days a week to help him gain strength, coordination, and awareness, and hopefully heal the nerves that AFM damaged.
Another unexpected struggle Cooper has to deal with is the inability to speak. He has to rely on the people closest to him to read his non-verbal communication and sound effects to try and help him. Recently, He has been learning to use an Ipad with special software that tracks his face and allows him to pick words off the screen to communicate with us. He is still learning how to use this device and the training seems to frustrate him.
It is very obvious that Cooper is different from other 3 year olds. We often have to explain what AFM is to people when we first meet them. We never try to hide that Cooper has AFM, but sometimes we avoid going new places or situations that would be hard for him like places where wheelchairs can’t go or where his presence would be distracting. People often want to know all about Cooper and sometimes our family gets really overwhelmed by the questions. It kind of feels like we are “on display or on stage” whenever we go out in public. It’s hard to enjoy things we use to do because it’s quite a production getting Cooper out and about. Add in the staring and questions and sometimes we just prefer to stay home and out of the “public eye”
It would be most helpful if people knew that AFM exists. Most kids just say I have ADHD, or I broke my arm and people understand what that means. When we tell people Cooper has AFM, it doesn’t ever really answer their question of why he is different and I find it exhausting to explain AFM to everyone who asks. I feel like I spend most of my time talking to other people teaching them about AFM. Sometimes I miss talking about things other than AFM or Cooper’s medical needs. I wish more people wanted to talk about what Cooper likes to do or how his day is going, but I know that is hard since he can’t speak.
Cooper is different from other kids his age, but we have learned to embrace his unique situation as a family. We live by a quote from Dr. Suess, “Why fit in when you were born to stand out” Afterall, who is actually normal? Though we have accepted his challenges, we still aggressively seek every available treatment to help Cooper regain control of his body and help him to meet his personal potential.
