Sunday, February 13, 2011

Still Hungry for a Cure

I have to admit, I don't think about PWS much. Delilah is at a remarkable stage where we don't even notice it. Except for a few development delays (mostly speech), she is just like any normal child. Yet, every once in a while PWS hits me like a ton of bricks, knocking the wind (and tears) right out of me.
This afternoon has been one of those days.

I came across this video on Facebook. It was beautifully created. I held it together, right until the young girl said she couldn't have babies. So unbelievably sad and unfair. I knew this was one of the symptoms of PWS, but to hear it come from a young girls mouth made it that much more real.

But let's back it up a little. Before one can have babies there has to be a significant other. Will that be possible for her? Will it even be possible for my daughter to go on her first date? Will she ever have a boyfriend? I don't think about these things ofter, but when I do my heart grows tighter and tighter. I want my little girl to have everything she desires in life, including LOVE. But how can I make this happen? One word, Fundraising.

We need to raise money for research. Research to find a cure for PWS. Research to help my little girl grow up to lead and independent life. A life she deserves. A life that all children with PWS deserve.

I am in the beginning stages (very beginning) of figuring out how to host a fundraising event. May is Prader-Willi Awareness Month and I would really like to plan a walk-a-thon or something similar to raise money for PWS Research. Here's the thing, I have no idea where to begin. I have ideas, such as hosting a silent auction at said event, but am unsure of where to start. Any ideas or suggestions? This is all very new to me, but I am determined to make it happen. If you would like to help or know where to lead me, please leave a comment or email me.

And be sure to watch the video. It is truly worth the time.


  1. Not much advice on fundraising, other than contact PWSAUSA or FPWR and they can walk you through the steps to put one together. FPWR is looking for more people to host "One Small Step" and it's usually held in August (i think). You could probably find information on Facebook about it.

    One thing that made me really happy after talking with Dr. Miller last month was that she said there are some adults with PWS that are engaged and some even married. Finding love is definitely a possibility!

  2. I saw that video and thought the same things you did. I want my little sweet girl to find love; and I want her to have the best man possible. It gets so much more complicated.