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Friday, May 13, 2011

A Cure For Hunger???

While many great organizations work hard to feed the hungry, Prader-Willi Syndrome organizations are working hard to fund research in the hopes of finding treatments and... A CURE FOR HUNGER???
Too many children in the world will go to bed hungry tonight.  But unlike those who are malnourished and lack access to food, children affected by Prader-Willi Syndrome (PWS) will go to bed hungry, no matter how much they eat. Their hunger never goes away... Ever!


May is National Prader-Willi Syndrome Awareness month.
Through awareness we find support... Through support we find answers... Through answers we find cures... And, like many other children around the world, my daughter Kirsten is “Hungry for a cure”. A cure for the hunger! 

Prader-Willi Syndrome has an incidence rate of 1 in approximately 15,000 births. The result of a deletion in the 15th chromosome, the most prevalent issues associated with PWS are low muscle tone and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity... Or death!
Parents in the PWS community have to be strong enough to say no to a child who is always hungry and often crying because their tummy hurts. Parents in the PWS community also have to count calories, measure food portions, put padlocks on refrigerators & pantries and they worry about unsecured food or situations where food might be offered to their children by someone who doesn’t understand... Doesn’t understand that, yes, that little amount of candy will make a difference. And yes, our children are hungry... They are always hungry! Our children are fighting a relentless hunger that impairs judgement and puts them at risk, not only for weight gain, but death from stomach rupture.
I am one of the thousands of parents in the worldwide PWS community. My daughter Kirsten (7) has Prader-Willi Syndrome. Even with the many, many therapies, doctors visits, blood draws, medicines, twice daily injections, crying for food, tantrums and total meltdowns... Kirsten has hopes & dreams, imagination, creativity, a sense of humor and a smile that touches your heart. 
Prader-Willi Syndrome is not who Kirsten is, it is what she has. Who she is and becomes is determined by the friends and family in our community and in her life.
For more information on Prader-Willi Syndrome and ways you can help raise awareness or donate, please go to www.pwsaillinois.org or email TerryLGuinn2@gmail.com  

Sunday, April 24, 2011

Donations to G.O.

Happy Easter everyone!  Today is a perfect time to post, as promised, about Dianne Miller and G.O. Ministries.

Two weeks ago I got to meet Dianne Miller of G.O. Ministries.  She is from this area and was visiting from her new home in the Dominican Republic where she works as a missionary.  Dianne was a guest speaker at our church where she shared her experience and how she was called to missionary work.  After church, Dianne shared many more stories over lunch.

Most of my Blog posts address food, illness, affliction and the needs of our children. All important, until you realize the suffering of those in other countries who have no relief or remedy from the things we complain about and work around. Such is the life in places like Haiti and the Dominican Republic. What is most stressing to me is the number of children who live in the streets who, like many of the children who actually have a home, don't have enough to eat.

Even worse, in the Haiti/Dominican Republic area, a child with special needs like my daughter who has Prader-Willi Syndrome, would be left in the streets and disowned... Considered broken and defective.   Dianne shared many sad stories, including the story of a little girl she tried to get much needed medical support for, but the help came to late.

You might ask... What does this have to do with health and Easter?  I shared today with our church congregation the thought that we spend to much time looking for answers and an "edge" to get ahead... When we should be looking for opportunities to help others, with a strong faith that our Lord will take care of us.  This is a healthy focus that is missing from many lives.

It is a big step to walk away from family and friends to work in a country where your own life is in danger every moment. A step that many of us are unable to take.  But there is an opportunity for us to help. G.O. Ministries works to feed, teach and provide medical care & shelter for many children and families.  They can not do this without our financial support. If you would like to help, click this link... Make a Difference.

Sunday, April 10, 2011

Phasing Out Stages of PWS

There is hope! But in the meantime...


I have been away for a while and I am limited on time today, but let me share some new information about Prader-Willi Syndrome (new to me).  It has to do with research that has been ongoing.


With Prader-Willi syndrome, current information includes two stages as they relate to nutrition and hunger. New research has determined or identified seven nutritional phases. It is something that has been talked about for a few years and has just now, it seems, gained legitimacy. An abstract has been published by the American Journal of medical genetics and you can read it at this link "Abstract".


I found this link in a wonderful Blog by a mom in the Prader-Willi Syndrome (PWS) community who Blogs daily about her life. Check out "diving into the waves".


I see hope in this new information because 1st, it is ground gained in the understanding of PWS. And 2nd, it gives us all hope that our children might be the rare few that gain the ability to feel full when eating (something I thought impossible).


On another note, I had an inspiring day today. I met Dianne Miller of  G.O. Ministries and will be posting about some of my thoughts that were inspired by Dianne.


In the meantime, if you are in need of green cleaning products, natural nutrition or weight loss products, check out my Shaklee page.


Terry Guinn, A Healthier You Too


Treat your family to the quality products they deserve. Shaklee products are always safealways 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

Monday, March 28, 2011

What is the Lesson Here?

1st Grade Egg Drop - 2010
A schools requirement for good personal hygiene and child safety... Is cutting into their child's edjumacation!  
Our schools work hard to protect our children from strangers, contamination, health risks and discrimination. It would seem that if parents in Edgewater Florida have their way about it, some would be protected against the unreasonable requirement of washing their hands in school.

Schools are required to make accommodations for children with special needs, or disabilities, and in some cases this affects other children.  In Edgewater Florida, children in one class are required to wash their hands before entering the classroom and to keep their lunches in the hall outside the classroom. All of this because one of the students has a severe peanut allergy. 


These special life saving precautions have parents angry and protesting with signs in front of the school... With their children carrying signs right along with them! They are calling for the "disabled" students removal from the school because of the special accommodations that have infringed on the rights of their children. These poor SIX YEAR OLDS! Their children can't have treats in class like the other classrooms, they can't keep their lunches in the classroom like the other classes and as I said, they are required to wash their hands before entering the classroom, which amounts to twice daily. 


As a parent of a special needs child myself, I can imagine the stress this has put on the parents of the little girl who is the focus of all this. They have, as a result, pulled their little girl from school and gone into hiding. Last year my son experienced the same accommodations at school for a student in his class. So far he has not exhibited any signs of trauma from the experience. Perhaps he is immune because he has a sister with special needs. His little sister is also in first grade, just as the class affected in Florida, but she has Prader-Willi Syndrome. Or... Maybe parents in our city have a little more compassion for those struggling with disabilities and have taught their children to be compassionate as well. 


I read an interesting and timely quote today, shared by one of my friends on Facebook. "The difference between school and life? In school, you're taught a lesson and then given a test. In life, you're given a test that teaches you a lesson.” - Tom Bodett
I can't help but wonder what the children are learning from their parents over this, in this Florida town, and what lesson will be learned by these protesting parents in the end. 


With my daughters syndrome, we have tried to avoid as many restrictions as possible at school, but food is a risk for her as well. Not from allergies, but a risk of stomach rupture. With Prader-Willi Syndrome (PWS) there is a constant hunger, among many other issues, and no amount of food will satisfy that hunger.  As a result, those with PWS are at risk of literally eating themselves to death. Those with PWS have been known to steal food, talk others into giving them food and even raiding the garbage cans for discarded food. Locks on refrigerators and food pantries are a requirement at home, as are locks on the doors to prevent exiting in some extreme cases.   


The world is seeing a rise in children affected by many issues, diseases, syndromes, ect., and it won't be long before protection in the schools will mean all classrooms are subject to special precautions.  With obesity on the rise, it is a wonder that food, treats and snacks in the classroom haven't already been prohibited, to add more time and focus on learning.  It has already begun in one of the schools here where I have two children.  


With the growing risk of so many potential health issues, one way to protect our children when their not in school, is through healthier choices and a healthier "greener" lifestyle. Shaklee products really are a great way to start. When it comes to nature, natural, my family, and especially my little girl who has Prader-Willi Syndrome, I trust Shaklee products to give me added hope for the future.



Terry Guinn, A Healthier You Too


Treat your family to the quality products they deserve. Shaklee products are always safealways 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

Friday, March 18, 2011

God's "Special Gift"

Kirsten loves soccer

Your daughter may never walk, she will likely be severely mentally challenged and she will struggle with obesity... Her whole life!  
They say God will never give you anything you can't handle.  Not very comforting to parents who have just received devastating news from the doctor who has diagnosed their brand new baby with Prader-Willi Syndrome... Or any other disabling birth defect. It also doesn't help as you work the phones looking for ongoing medical, therapeutic and financial support. Nor does it help as you lay awake at night worrying about your child who is struggling to survive. New challenges, new fears... And new strength!
What had started out, in my mind (and believe me, thats a scary place), as a post on behavior as it is influenced by our environment... Has changed direction today due to inspiration from a couple of "Moms Blogs" that I read. They reminded me of a "technique" of sorts, that has become a routine for me and was created through my experience, and those things that have been an influence on me.  
It is so simple, common sense really, but many of us overlook or forget this one strategy that can help almost anyone.  I had to re-learn it as a member of a Toastmasters club, but it has so much more adaptability to everything we do.  The Toastmasters club mission statement (what should be part of our child rearing focus) says it all: 
The mission of a Toastmasters club (or our home) is to 
provide a mutually supportive and positive learning 
environment in which every individual member has 
the opportunity to develop oral communication 
and leadership skills, which in turn foster 
self-confidence and personal growth.

A positive and supportive attitude is contagious, and can change lives! What doesn't reach out and grab you in this mission statement, does hit home with the Toastmasters Club experience. Just for starters, every individuals speech is evaluated orally by a peer, focusing on the individuals strengths and also providing a few suggestions for growth, but always in a positive and supportive manner. And this is just the tip of the iceberg! A great positive learning experience for anyone that can help in all aspects of your life.
Imagine if we didn't accept that our children had limitations. Because they don’t! Imagine if we didn't allow the doctors to label our children and put them in a one size fits all box. The box doesn’t exist! Imagine if our children, who look to us for guidance, reassurance and support, believed in themselves... Just as we believe in them!
They say God doesn’t give us anything we can’t handle... But they also say that God provides everything we need. Perhaps God loved my family so much, that he saw the need to send Kirsten to help us find our way home.  Kirsten was such a blessing for me and my family... And I couldn’t imagine life without her smile, her laugh, her habits, her routines and her love. She is surprising us every day with her accomplishments. She is perfect in every way, because God doesn’t make mistakes!
We are all God’s children and some of us are extra “Special”.  Treat your extra “Special” children as the “Special Gifts” from God that they are, full of potential and love, and God will take care of their... “Special Needs”.



As I said, God provides everything we need.  When it comes to nature, natural, my family, and especially my little girl who has Prader-Willi Syndrome, I trust Shaklee products to give me added hope for the future.


Terry Guinn, A Healthier You Too


Treat your family to the quality products they deserve. Shaklee products are always safealways 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

Saturday, March 12, 2011

Kirsten's Candy "Allergy"

Kirsten's Candy Jar
Must I lie to the school district??? To protect my child and to keep the peace at home!


Is it fair that only one class of youngsters must go the whole school year with no candy, treats or special parties, because one child has many allergies.  We know that some allergies can be so severe that they can result in death, and obviously all school teachers and administrators take that very seriously. So why is it so hard to understand... That giving a child who has a problem with food and weight, extra treats, is a bad thing? With the potential of life threatening consequences!


Aaarrrgghh.... My daughter Kirsten came home from school today (she rides the bus), and in her backpack was a nicely decorated jar that was about half full of skittles candy. No note or indication of how full it started out and it's Friday. On top of that, she had a goodie bag.  The candy jar was the prize for a successful guess, 280, of "jelly beans" (skittles). 


Is it so hard to understand that with Prader-Willi Syndrome (PWS), children lack control and understanding when it comes to limits on food. Why do these teachers say they understand, when clearly they do not! And why do so many continue to reward our kids with more and more candy... When obesity is a worldwide crisis?


With many children, the effects of PWS may not be as apparent, because even those with PWS have different metabolisms and environment that affect their growth, but my daughter is overweight.


To top it all off, the behavioral issues that are a part of PWS are worsened when routines are changed or when they can't have something that is theirs. What child is not going to be upset when someone takes their candy away?


It can be very frustrating! But, to try and punish all children (take away their right to treats at school) for my daughters syndrome isn't right either. My wife has seriously considered home schooling, but school has helped keep Kirsten's mind off food... Most of the time.


Prader-Willi Syndrome is hard to understand for most, because they don't live with it and... In their minds, how can a little candy now and then hurt? Aaarrrgghh... 


Most in the PWS community understand my frustration. For a mom's view on this subject, and a great comparison for better understanding, check out my friend Laurie's Blog post "It's official - I'm twice as stressed as everyone else..."



Because of this syndrome, my daughter does not burn calories as effectively as you or I, so she can not have near the normal amount of calories for someone of the same weight.  Managing her diet is very difficult, as you can imagine, and insuring that she gets the proper nutrition is also a struggle.  It is something she will deal with her whole life.  

I have always believed that if there was a chance to give her even a fraction more of potential for the future, it would be well worth it. That being said, Kirsten takes the ShakleeKids Incredivites (multi-vitamin/mineral) and Mighty Smart (100% DHA). If my family is going to use premium dietary supplements, green cleaning products, ect., I want to be able to find peer reviewed information that is available to the public, on the internet, to back up their quality.  Shaklee has this and provides these references for the whole world to see. It is in the "Clinical Research" section of their order guide. 


Terry Guinn, A Healthier You Too


Treat your family to the quality products they deserve. Shaklee products are always safealways 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