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".
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
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.

Give it All to God For Your Health

Words to live by... Or face potential stress related health issues. 

I have written lately about many health risks that are physical in relation to environmental or manmade creations and tonight I want to write about something spiritual in the way it too can affect our health. 

All over the world people are calling for prayer. Prayer for our nation, other nations such as Egypt, for our government in their decision making, for our soldiers safety, for families in turmoil, for a loved one, for a child struggling for life, and the list goes on. To take on these burdens and worries individually would surely drive an individual to depression.  That is why we “give it all to God” in prayer.

Sounds simple, but many have not learned to simply "give it all to God" and go on their way (not that that is how it is supposed to work).  Something about seeing someone close to you suffer, a looming home foreclosure, potential employers who aren’t calling, and many other things that seem to create a heavy burden of concern. Couple that with feelings of helplessness or guilt and you might as well break out the antacids and blood pressure medicine, because God probably isn’t going to be making any special appearance just to fix your problems.  It just doesn’t work that way.

The subject of prayer has weighed heavily on my mind since Sunday at church when my Pastor spoke about it.  Almost as if God was speaking to me through my Pastor.  One thing is for sure, the signs of prayer are all around us and what I believe many overlook, is the message that might not be clear or the potential for relieving stress. What is clear, is that we cannot do “it” alone.

I therefore present three words and thoughts for your consideration. Understood and put into practice, could help many change the world and reduce stress related health risks.

• Sharing - in anything, we should be sharing.  It is good for the heart and can change a negative into a positive which can be contagious. In the Bible, sharing the good news was not just a time of celebration for those who accepted it, but a growing of a family.  Imagine the excitement of saving a life and developing a new bond... For eternity.  I experience that same excitement when I gain a new friend on Facebook in the Prader-Willi Syndrome community.  Not only are we sharing a new friendship, but we share some of the same struggles and together, we are stronger. 

• Prayer - in everything we should pray. God answers all prayers... Even when the answer is no.  Think about it this way.  If, through some sort of guarentee, God were to solve all your problems...  Why would you need anyone else in your life... And how could others grow?  We need each other for support, because we grow from each others needs and struggles... What good is a heart that can't be broken, melted or warmed?  Prayer can also provide answers in the way that brainstorming can provide solutions.  When we share our burdens, someone may have the resources, or need, to help.  Regardless, praying together for a common need or concern, gives us strength. 

• Judgement - Do not judge, or you too will be judged. Judgement can be like the weeds that grow in a farmers fields. They get collected up in the harvest and can lessen the value and quality of the crops. Any time we allow negative thoughts such as judgement to become our focus, we are allowing negative energy to affect our lives. Often, judgement is placed without knowing all the facts or by making assumptions. An individual on Facebook who is cleaning out their invites box that has been filled with invitations to everything under the sun, may unknowingly click “not attending” for an event that is simply a call for simple prayer, for a newborn who is struggling for life. Imagine the friends of the family, of that infant, who see that response and think the worst of that person, who may be the nicest person on earth. 

To sum it all up.  

• Through sharing our lives with others, our family grows and we grow stronger.  
• Through prayer, God works through us to help others and others to help us overcome obstacles. 
• Absent judgements, we are free of the infestation that can poison our lives and effect our outlook. 

When you "give it all to God" in prayer, you must also be willing to allow God to work through you to help others.  Like problems that create stress, loads carried by many are easier to shoulder than the same loads taken on alone.  Share, pray and accept... For your health.

One more note: People from around the world are coming together in Prayer, on Facebook, for a little girl and her family. In less than 48 hours, almost 1700 people have come together in prayer.  Check out:
Prayer Chain for EllyAnnah

A Genetically Engineered Future

Are we approaching a future where “organic” as we know it will no longer exist?  Is it also possible that the world food supply could be controlled by one company? We seem to be heading that way as the use of Monsanto’s genetically engineered (GE) seed grows in popularity. These crops are already in our food supply and being fed to livestock.

I read a lot of articles and looked at many resources looking for information to complete my last Blog post, and a name that I am very familiar with kept popping up, Monsanto. Perhaps it is just because "someone has to do it", but Monsanto has been connected to many dangerous products in its long history. Things like saccharin, DDT, Agent Orange, PCB's and nuclear weapons. Monsanto on Wikipedia   

As I said, I am very familiar with the name Monsanto. I spent twenty three years in the dairy industry in retail distribution, with time spent in my early years driving a farm tanker on weekends picking up bulk milk, and I became very familiar with the battles over rBGH.  

If you explore the internet for Monsanto related articles, you can find a lot of disturbing information on contamination, poisoning, intimidation, law suits, ect. Of course "the truth" is in the eye of the beholder or in this case, the eyes of the writers. I try to keep an open mind when it comes to what I read, based on what I know about business and the world. What I am somewhat familiar with are the lawsuits over promotion of milk that was not produced with Monsanto's rBGH, because of implications through marketing that milk produced by cows treated with rBGH was inferior or unsafe. Monsanto was very aggressive in its fight against the Dairy industry over labeling and marketing that had the potential for cutting into their profits. It appears that the farming industry has faced Monsanto's wrath for even longer, according to many articles like this one from 2008, Monsanto's Harvest of Fear, which continues to be referenced by many because the author provided so much information that if true, is cause for concern on many levels.

As you explore the internet, you can find a lot of articles referencing a fear that has continued in the farming industry.  You can also read about how farmers desperate to make a profit to feed their families, have been turning to GE seed and those who don't, find themselves dotting i's and crossing t's to protect themselves from the "seed police".  

On one side, you can understand Monsanto's interest in protecting its company from theft through unlicensed use of GE seeds and unfortunately, some "bad seeds" have given them good reason to have concern. I can also see the need to solve the worlds potential food shortage, as the worlds population continues to grow at an alarming rate.  But I also see this as a potentially bigger problem that began the day when the first GE seeds were approved for use. That is because of the lack of or limited studies used to gain approval.  


For us who lack the understanding of these complicated technologies, we must rely on published studies and our government to protect us. But, what happens when those published studies contradict the safety of those technologies and our government continues to make questionable decisions and create questionable policies? Almost as if they are being manipulated by big corporations. If you believe the articles written about the latest Monsanto triumph in deregulation of RR Alfalfa, you have to wonder about the future of our ecosystem, plant life as we know it,  animal health, the effects of GMO’s on humans and... Are we approaching a future where “organic” or “natural” as we know it, will no longer exist? 

One company that is still holding on to its over 50 year commitment to produce products from “natural” ingredients, is Shaklee.  To insure that commitment, Shaklee conducts over 80,000 quality tests annually to guarantee purity and safety. For my family, and especially my little girl who has Prader-Willi Syndrome, Shaklee products 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

Potential Milk Recall Averted!

Could you imagine a contaminated supply of milk making it into the refrigerators of thousands of homes??? It could already be happening but thanks to a decision by the FDA, under pressure from the dairy industry, we may never know.

Recent articles have revealed a disturbing revelation about our government and why we should be concerned about our food supply... LOL  Yes, it took me a little while to stop laughing too.

According to a New York Times article, the FDA has for years considered expanding testing of milk for more than the four to six antibiotics it currently tests for.  The reason being, that illegal drug residue has been showing up for years in older dairy cows bound for slaughter.

In testing that was to begin mid January, some of the farms listed on the Department of Agriculture's "violator" lists would have their milk tested to determine if there is any correlation between illegal drug residues found in tissue samples of meat from culled dairy cows and the milk supply from these farms.

Here is some interesting reading from the International Dairy Foods Association (IDFA) website, December 20, 2010, January 7, 2011, January 13, 2011 and here is the New York Times article from January 25, 2011 that is spreading like wildfire around the internet.  The following letter however, I believe, defines a clearer picture of the $$$ concerns that effected the decision. IDFA & NMPF LETTER - 12/13/10

SO... To avoid the risk of farmers being forced to dump potentially contaminated milk at a loss or the risk of contaminated milk getting into the milk supply... No tests will be done.  This reminds me of the Military's policy of "Don't ask, don't tell".  As long as we don't test it, we won't know if it is contaminated and therefore, no action needs to be taken.   Is it any wonder why many countries have a ban on some food imports from the U.S.

In doing my research for this post, I came across many disturbing things about the history of our governments decisions and their very short term memories.  That being said, my next post will reveal some unbelievable, at least in my own mind, facts about the history of one large corporation who seems to have a lot of power over this country.

How are you protecting yourself and your family against the potential risks of antibiotic-resistent infections that are believed to be a result of a poorly managed food supply, including our milk?  A great first step is to insure that you are eating as healthy a diet as possible to give your body the strength to fight the attacks from mutations, toxins and chemicals that are a major part of our food supply and environment these days.  Have you considered using dietary supplements? 65% of Americans use them, including my family.  Only the best for my family, from Shaklee.  For my family, and especially my little girl who has Prader-Willi Syndrome, Shaklee products 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