This is my story on loving someone with Prader Willi Syndrome, my younger brother. 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 thought another brother or sister to play with, and to see grow up was great.
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 dad 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. He 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.
What Is Prader Willi Syndrome?
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 so my parents took him to the doctor. Many tests and observations were done, and a diagnosis was given. My brother was diagnosed with Prader Willi. I did not know much about it, so I was just saddened that he was diagnosed with this rare condition.
It has been a long journey of understanding and caring for someone with Prader Willi. Prader Willi Syndrome 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 problems 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. However, we had learned to control it better than we had previously. Continual monitoring was necessary to make sure he did not eat everything he got 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 Willi Syndrome. 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 his mental processes. Sometimes, I have 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 Willi to support him as much as I can.
Lastly, I hope more resources come about for others who have loved ones with Prader Willi. For anyone seeking advice, I recommend consulting Dr. Jain, she is the best Pediatrician around for kids’ health.
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