My name is Georgie and I have Prader-Willi syndrome (PWS). Some of you may know me, but you might not know the love and patience that have been required by my Mom to get me where I am today. Please take a minute out of your busy day to hear my story. Babies like me everywhere need your help.
When I was born I couldn’t move or cry or even suck very well. I was like a rag doll. The doctors called me “failure to thrive” and “content to starve,” but Mommy called me a miracle. I slept all the time – nearly 24 hours a day. My mom had to set the alarm to get up to feed me because I was too weak to cry. I couldn’t hold my head up or stay awake to eat. When other babies smiled back at their moms, I couldn’t. I didn’t have the muscle tone to smile yet. My mom had to make it through those early months knowing that I loved her, but I couldn’t show it. I know that was hard on her, but she loved me and insisted that I got the nourishment I needed. Sometimes it took an hour to get me to drink a couple of ounces. She learned to watch for the smallest sign from me that I was uncomfortable, because I couldn’t squirm to another position. She listened to me with her heart and loved me unconditionally. I felt her love as she held me and rocked me and sang to me, but I could barely open my eyes to look at her.
I’m getting stronger every day and my family is adjusting to my delays. They know that PWS kids eventually learn to roll over, sit up, crawl, walk and talk. It just takes us about twice as long as typical babies.
But the hardest part for us is yet to come. Most likely by the time I master all these milestones, hyperphagia will set in. This means that I’ll never feel full again. Even after a big Thanksgiving meal, I’ll feel hungry. Ironic, isn’t it? A baby who was “content to starve” will one day never be finished eating. When this happens, mommy may have to lock the cupboards and the refrigerator. She’ll have to count my calories, because I’ll have a slow metabolism and will gain weight easily. I may forage for food in the trash or sneak out of bed in the night to gorge myself on anything I can find.
I don’t want to eat too much. I don’t want to get so fat that I could die. I don’t want my Mom to worry about me every time I leave the house. I wish these things wouldn’t happen to me, but there are no medicines to help me. No diet drugs will stop my appetite once it starts. No medicine will make the gnawing in my belly stop. Everybody get hungry, but try to imagine not being able to make the pain go away. I need your help to find a medicine to stop the hunger. Don’t you think I deserve the chance to have a normal future? After all, I’ve had a really hard start. And I’ve worked really hard to do all the things that typical kids do easily. I’m just getting to the point that I can do the things that my friends can do. I don’t want to be different.
I can smile now, and I don’t want to see my mom cry because her heart is breaking for me.