Vascular Birthmarks Foundation Forum - View Single Post - PWS to entire right arm/right chest...anyone else????
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Old 06-04-2010, 07:38 PM
Talans Mommy Talans Mommy is offline
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Join Date: Jun 2010
Posts: 14
Default It will be okay.

Kristen,

First and foremost, everything is going to be okay. You have a beautiful little life that you have been blessed with. You will love and be loved by that child forever. That being said, I understand completely where you are coming from. My son was born 5 months ago with PWS covering his left foot/leg/buttocks and lower back. They are multiple marks (not just solid all over). There are a lot of them. At first, I just wanted to crawl in a ball and cry. Like everyone else, I want a perfectly normal child that will not be stared at or ridiculed. I thought long and hard about how I could have them removed. I worried whenever someone came to see him. I tried to keep them covered as much as possible at first. Then, I started doing research and seeing what things can be associated with PWS like his. We saw a Specialist that did an ultrasound which came back normal. We are now set to have an MRI done soon. They want to check for KTS although the limb is growing normally for now. Now, I just pray that he doesn't have KTS and its just PWS. Funny how it can always be much worse. But, I have come to terms with it. You will too. I can promise that. Now that its summer, I take him everywhere without pants or shorts. Sometimes people stare a little, sometimes they don't. But, it doesn't bother me anymore. I love him more than anything. And no matter what comes from this, we will tackle it head on. We are going to discuss laser therapy after his MRI is done. But, I will just be so greatful if he doesn't have KTS that it won't matter to me if he has the PWS for life or not. Good luck to you.
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