Wednesday, May 26, 2010

Running for Lillian

I really struggled to write this post not because I didn't have the time or because I had other obligations, it's because I just don't know. I don't know what it's like for my friend Sare to look at her daughter, Lillian, and know that she is beautiful but different. I don't know what it's like to walk into the hospital on delivery day so excited, so hopeful, so eager to start the family of my dreams and then watch as they take my child away in a helicopter for testing. I don't know what it's like to worry about my daughter's future: will she have friends? Will she be functional? What will happen to her after I'm not here to protect and take care of her? I don't know what it's like to have a child with Prader-Willi Syndrome.

Prader-Willi Syndrome is a genetic disorder that is the leading cause of life threatening childhood obesity. It causes short stature, low muscle tone, incomplete sexual development, low IQ, and an insatiable hunger. If you watch Extreme Makeover Home Addition you may have seen the family with a son with PWS.

Even though I may not know what it's like to have a child with PWS I know that Sare is an amazing mom. She is hopeful and positive. When she does have a breakdown she is so open and honest and raw about it that it makes you want to wrap her up in support. She has never once stopped fighting for her little girl. Between doctors, second opinions, physical therapists, and dieticians she has never once wavered in her strength or determination to get her child what she deserves regardless of what anyone says.

Even with all that on her plate she has never once failed to lend a supporting ear, offer advice, or rally behind anyone who needed it. Well now she needs it. Some lovely ladies are running to raise money for PWS...Running for Lillian. If you can help with a donation (any amount can be helpful) that would be amazing, if you can't donate money help raise awareness by blogging, tweeting, or grabbing the button to raise awareness for Lillian. Also, stop by Sare's blog and tell her that she's doing an amazing job.

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Mom of the Twinkies and Tot! said...

There is a little girl at my school who has PWS and there are times when it becomes very difficult for her but she has an amazing mother behind her and the kids in her class are so accepting of her and really have formed an amazing support system for her as well. It's amazing to see kids at this age (7-8) be so accepting and kind. I hope she grows up with these same kids and they continue to act like that all through school for her.

I too would have a hard time posting about this and imagining yourself in your friend's shoes. Thanks for making us all aware of how lucky we are and what miracle babies there are out there!

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