PWS Awareness – Why I fight.

I often find myself sitting and staring at my daughter, contemplating the complexities which are Prader Willi Syndrome.  I wonder about the future and how much having PWS is going to affect her life.  It pains me everyday thinking about how she will not have a perfectly typical life. My heart breaks every time I remember that unless a “cure” is found, my daughter will feel like she is starving every moment for the rest of her life.

My daughter is why I fight to raise awareness. My daughter is the reason I am constantly posting things to Facebook, things you might think are annoying, repetitive, or unimportant. My daughter is the reason I will keep moving forward and trying to raise awareness.  Without awareness, there is no chance for a cure. Without awareness, you cannot understand the complexity and severity that is Prader Willi Syndrome. Without understanding, or at least trying to understand PWS, you will not understand my daughter.

I was told a few weeks ago “You don’t really want the diagnosis to define your daughter.”  At the time I didn’t really know how to respond to that. Honestly, maybe even now I don’t truly know. It’s a complex thought to try and wrap your head around. Especially when PWS is present in everything she does.  The best response to that statement that I am able to give is this:

“My daughter is Emelyn. She is amazing and is not Prader Willi Syndrome… But she has Prader Willi Syndrome. It is a part of who she is, and a part of our family as a whole.  We are on this journey together, and it has become a part of our identity. Prader Willi Syndrome is present in almost every aspect of our daily lives.  While the diagnosis does not define my daughter, the diagnosis is a part of the definition of who is Emelyn.”

4-up on 2014-03-14 at 8.01 PM #5

Emelyn is the reason I thought a challenge for my friends and family for the month of May, which is Prader Willi Syndrome Awareness Month.  If you haven’t had a chance to read about the challenge, you can do so by clicking here.

PWS and healthy living go hand in hand. Healthy food and exercise are crucial to my daughter living a long life with hopefully less health complications.  With a slow metabolism, and easily tiring from simple activities, challenges in this journey are faced daily.  But with Awareness and support from friends and family, I truly believe that we can give Emelyn her best chances. Her best chance towards a future where, despite the limitations and challenges she faces, she can thrive and grow into the the remarkable person she is meant to be.

I hope that I can count on you, my friends and family, to fight along side of us.  Help us fight for a future where my daughter is not in a constant state of starvation, a future where we can eliminate the challenges she will face because of her genetic code.

Along with raising awareness during May. We are also hosting a fundraising walk in July! If you are local (or not) we would love you to attend.  If you cannot attend, and would like to make a donation to the cause, we would very much appreciate it.

Please click this link to be directed to our fundraising page which also contains information about the time,date and location of our One SMALL Step Walk!  CLICK HERE 🙂




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