Prader-Willi Village

www.celebratedifferences.org

In the Prader-Willi village (or community), we share because we care... And "it takes a village to raise a child".  

How is it that the perfect parent (as if such a thing exists) could raise a child that will struggle physically and mentally?  You know those parents... They are the same ones writing books, creating videos, lecturing and telling you just how you should raise your child!

The truth is, there is no "one size fits all" to parenting. Yet many parents struggle to find answers, unsure of their own abilities and concerned about the future of their children.  This can hit especially hard in the special needs community where parents are searching for answers where fewer answers, or opinions, exist.

More and more, parents are turning to the internet to find answers. More and more, forums are popping up with many parents ready to share their tips and strategies for raising a special needs child. And, more and more, parents are questioning their own parenting techniques in the face of so many other parenting success stories, at least in what they perceive as success.  I see this often as I search and interact with other parents on-line who, as I do, have a child with Prader-Willi Syndrome. 

My twins (not so much)

It really does take a village to raise a child, but what some don't realize or forget because raising a special needs child can sometimes be overwhelming, is that just because our children have a syndrome or disability, the syndrome or disability is not the result of an identical corrupted set of DNA. Just as everyone has a unique set of fingerprints, everyone has a unique DNA.  Including every individual with Prader-Willi Syndrome. To dig a little deeper into DNA and better understand genetics, or even deeper into epigenetics (way over my head) is to come to the realization that even identical twins are probably not 100% identical at birth... And they grow less and less identical through life. 

Bottom line, and a line I love... Prader-Willi Syndrome is what they have and not who they are.  

In the Prader-Willi village, or community, we share because we care and it really does take a village to raise a child... Even if that community is only there for much needed moral support!  And every child with Prader-Willi Syndrome is unique, with different needs, abilities and potential. But, while the village can help, mom still knows best because she has a special bond and connection, a mothers intuition, that will help guide her child to reach their potential. 


Just as no one knows better than mom when it comes to her own child, no one knows better than you what is best for your family and how best to provide for your family. When it comes to my family, and especially my little girl who has Prader-Willi Syndrome, I trust Shaklee products to give me hope for the future.

Terry Guinn, A Healthier You Too

Treat your family to the quality products they deserve. Shaklee products are always safe, always work, and are always green. If you would like more information about Shaklee products, please contact me, Terry Guinn, Shaklee Independent Distributor, through my website at  www.ahealthieryoutoo.com or if you would like to checkout the products for yourself, go to my Shaklee page at  www.ahealthieryoutoo.myshaklee.com 

Shakleebaby & Shakleekids

Research, For Our Sweethearts

The Prader-Willi Syndrome Association (USA) is conducting its 9th annual Valentine's Day Research Campaign all of February.  On Valentine's Day as many break out the chocolates and serve special dinners, many families will struggle to keep their routine of healthy eating because their childrens lives depend on it. Our sweethearts with Prader-Willi Syndrome (PWS) can't enjoy holidays as many children do.  They can't have the candy or enjoy the treats that are a part of most holidays because of their inability to burn calories effectively. Yet they not only have a longing for a normal life and an interest in eating just as any other child, they also have a strong unnatural craving and hunger for all food. An insatiable appetite that cannot be appeased no matter how much they eat.

We will celebrate Valentine's Day today and my daughter Kirsten (7) will come home from school, excited to have received valentines from her friends.  We will go through her bounty looking for any candy that will quickly disappear and to Kirsten, who will get a little now and then, may seem to disappear quicker than she though it would.  These are the tricks you learn as a parent to a child with PWS. You then change her focus to something exciting like her upcoming daddy daughter dance. Keeping these children active and focused on anything other than food is a full time job.  Managing weight is a lot of work and to allow even one day of splurging, or even a little extra, is ground that is lost and is not easily recovered.

Won't you please consider supporting research for our children and future children. Consider giving up a lunch, a special coffee, a fast food meal, dinner out, that stash of chocolates, ect.  Every little bit helps. A poster on the donation page said it best, "Inch by inch, it's a cinch".

Here is the link for the Valentine's Day Research Campaign taking place this month.  Click Here
 
Here is another on going campaign to help fund research. At the very least, please check out this amazing page called "Light a Candle, Be a Light for PWS"   Click Here
 
The Prader-Willi Syndrome Association is a very strong organization when it comes to family involvement, but when it comes to financial support, they struggle just as any other organization.  Much can be learned from our children who struggle from Prader-Willi Syndrome (PWS), but it will take more costly research.

$5, $10, $25 or whatever you can afford. Every little bit adds to the growth of funds that can help fund this research for treatments and solutions... For our sweethearts who are still "Hungry for a cure".
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Please also continue to pray for EllyAnnah.  For details and to join in spirit, go to the Prayer Chain for EllyAnnah on Facebook, already over 2000 strong.