I work as a Firefighter/Paramedic in Schaumburg, IL and my wife and I befriended another couple of which, the husband was a Firefighter/Paramedic in the Department neighboring mine. Our relationship grew quite close and when they announced they were pregnant with twins, my wife became godmother to their son. Shortly after birth, his sister, Madison showed signs of Liver disease. She was diagnosed with alpha-1 antitrypsin deficiency, a somewhat rare Liver disease. At 7 months old, it was determined she needed a Liver transplant.
by Nicole Sheetz
As I began my service at Joy's House, I decided that I wanted to get to know our Guests personally. To do this, you have to spend time with each of them. You have to ask them questions. Eat lunch with them. Play games. And you have to be patient and listen. Most guests are very willing to talk and once you find what makes them tick, it's pretty fun to carry on a conversation with them, or simply sit and craft together. One Guest, however, intimidated me. His name is Mr. Robert. He is a tall man (6'4") and he is living with Huntington's Disease. Now, if you are like me, you will have to Google this disease. What I found was that many describe the symptoms of Huntington's Disease as being like having amyotrophic lateral sclerosis (ALS), Parkinson's and Alzheimer's – simultaneously. It slowly takes away your ability to control your muscles and your ability to talk. It's not a "kind" diagnosis and I was nervous that I wouldn't be able to understand Mr. Robert. You see, he can't control his bodily movements and he wiggles around a lot. His voice is soft and his speech is not clear. His gait, when he stands, is very unsteady and I am honestly shocked that he stays upright with his walker. But, one day, I decided that I'd sit by him and just listen.
People just like you...doing monumental things.