Archive for April, 2014

Fight the Hunger – Please click to find out more!

Friends, Family, Subscribers and loyal followers.  I have probably already sent you a request to like the page Fight the Hunger  (if you are already a Facebook friend), if not please click the link provided and it will direct you to the Facebook page. This page was created to help raise awareness for Prader Willi Syndrome. The potentially life threatening and rare genetic condition that my daughter Emelyn has. Please like the page, and please follow my other blog at: www.fightthehunger.wordpress.com

Thank you for your support!

 

XXOO,

Mira

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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 🙂

XXOO,

Mira

Getting ready for PWS Awareness month 2014

May is Prader Willi Syndrome Awareness Month Usually for this month there is a challenge about giving something up. However,  to my family and friends, I would like to propose to you another challenge.

 

For the month of May, I would like to challenge you to try  and live life like my daughter will need to for the rest of her life.

 emelyn

I understand that life is chaotic, that it is busy and unpredictable.  This chaos and unpredictability is also in each person who is living with PWS life as well.

I have three options for the challenge, you can choose depending on the level of commitment you would like to give to PWS awareness month.

 


 

1. Commit just a week ( or two!! ) to counting your calories, and if you are up to it, set a HEALTHY maximum caloric limit that you will not exceed for this time.

 

2. Commit to tracking your daily calorie consumption for the month of May.  (This will provide great insight into your eating patterns, and you will be able to visually see where you are getting most of your calories and nutrition.)

 

3. Commit to setting a HEALTHY daily caloric maximum and tracking your calories for the entire month of May. (This is the closest reflection to my daughters daily life.)

 

Optional – Pair any of the above options with daily exercise.


 

People with PWS not only have an insatiable appetite, but also a metabolism that only works at about 60% of their typical peers.  This means that not only are they always hungry, but they need to be even more closely monitored in their calorie consumption.  Since the day Emelyn was born, I have monitored every calorie she has consumed. I spend hours each month specially preparing nutritious low calorie meals for her so that she will get all the nutrition and food her body requires. Taking care of Emelyn is a full time commitment.  She requires healthy low calorie meals, as well we plenty of physical activity( which is hindered by her low muscle tone causing her to tire very easily).

I hope I can count on you to help spread awareness of this rare and life threatening syndrome.  With your help we are one SMALL Step closer to eliminating the challenges of Prader Willi Syndrome.

To track Calories and nutrition we use the myfitnesspal App which is available for iPhone, Android, Blackberry, and Windows Phone. You can also use My Fitness Pal by visiting their website http://www.MyFitnessPal.com .  I am more than happy to answer any questions and offer any assistance you may need if you chose to partake in this challenge.