I was living in Los Angeles at the time when I found out I was going to have yet another sibling. I was around twelve years old, and the oldest of four. Being the oldest, I just thought another brother or sister to play with, and to see grow up. I believed our new addition would be born healthy and grow up normally just like the rest of us. Sadly, I was mistaken. My mom and father went to the hospital when the onset of labor occurred. My mother gave birth and stayed at the hospital for a while, we weren’t permitted to go.
Mom came back without our new brother, and she seemed to be in pain. Our family did not know why the baby didn’t come home with mom until later. My brother had a difficult time being born. He swallowed meconium in the birthing process. My brother was also born very limp and lacked muscle tone. He had to stay in the hospital to get intensive care to make sure he was okay. My brother had to be massaged and stretched to improve his muscles. We were taught how to do this by hospital staff. I thought he would be okay.
Sometime later, when my brother was around five or six, something changed in him. My brother went on an eating frenzy, my mom knew something was wrong. My mom and dad took him to the doctor. Many tests and observations were run, and a diagnosis was given. My brother was diagnosed with Prader Willie. I did not know much about Prader Willie, I was just very saddened at the fact that he was diagnosed with something.
It has been a long journey understanding and caring for someone with Prader Willie. Prader Willie affects the body in so many ways. It is a genetic disease, and it can cause one to never feel full. There is a constant need to eat, along with behavioral issues. Weight gain and metabolic issues can be life-threatening. I had to help my mother to take care of my brother, as our father died when I was in my late teens. This is how I learned so much.
I had to understand why my brother acted the way he did and realize a lot of it was out of his control. It was also out of our control. We have learned to control it better than we have previously, however. There must be continual monitoring of him to make sure he has not eaten everything he can get his hands on. I have awakened many times in the night to find him eating the food right out of the freezer. Other times, I had found him eating food out of the garbage can in our kitchen. The most extreme case that I witnessed was the consumption of two loaves of raw bread dough.
There have been other physical trials too, such as watching him go through surgeries due to having Prader Willie. The first one was having his tonsils removed due to sleep apnea. The second surgery was to have his leg straightened.
This leg surgery was to help avoid the curving of the spine due to his excess weight. A rod was inserted, and he recovered fine. Later, however, an infection ensued which called for another surgery to remove the rod. Now he has an issue with his leg that I won’t go into right now.
It hurts, as I can never understand what his body feels. I can never understand what his mind processes. I sometimes had deep pain in my heart wondering if one day his body might fail him from the stress of the weight. I wish there was a cure, to alleviate our family’s pain, and most of all to have my brother live normally. I try to love him as much as possible and continue to educate myself on Prader Willie to support him as much as I can. I hope more resources come about for others who have loved ones with Prader Willie.