The story of Cole
Hello, my name is Cole. My uncle died of Malignant Hyperthermia back in the 1970s, and when my mother became pregnant with her first child a decade later, her son was one of the first documented genetic cases of MH in the United States. Being born in a military hospital, and a premature birth, he was given a lot of special attention. Two more children, myself and a younger sister, followed. Now that we are child bearing age, my two children have been raised with the knowledge that MH runs in our family. We wear alert bracelets and have been able to teach anesthesiologist in the eastern US every time we have needed surgery. My son, also a micropreemie, was born on a military base and we were able to share MHAUS information sheets with them as well.
With MH, you can exhibit signs, or never know you have it until you go to surgery and it is triggered. Unfortunately, myself and one of my two children also show “awake” symptoms of the disease: sensitivity to heat and prone to dehydration, we have had to be especially careful of summers in the US south. Every teacher, nurse, and administrator of the kids’ schools has been able to learn about this disease through our presentation of MHAUS information, and we hope that through our education, another child can be helped should an MH episode occur.
Thank you for bringing attention to rare diseases!
