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Monday, June 29, 2015

Desserts into Dinero!!

my adorable niece when she was born...and today :) she's come a long way and is doing AWESOME!!

 Hey everyone!! If you don't already know what PWS is - let me explain.  Children with Prader-Willi Syndrome most likely have physical delays and some type of mental delay...but the most significant issue that PWS children face sometime in their life, is not ever feeling full. This causes many problems because food is then not only a distraction to them, it is an obsession.  And if left alone with no supervision or guidance, these children can become dangerously overweight and could actually eat themselves to death.

Parents have to be vigilant constantly, lock up food and cabinets and restrict all meals. For my beautiful niece, this hasn't become an issue yet because she hasn't hit this stage (it could start anytime after four years of age).  As if that in itself is not enough of a challenge, these children have a slow metabolism and have to eat LESS calories than typically developing children.
seriously...can you get any cuter than this?? :) 
The good news is, there are amazing people out there investigating, studying and developing medicines that can resolve many of these issues!!  In fact, a specialist that my niece sees in Florida, Dr. Miller, is extremely excited about a new study she is conducting (it's in its second stage!).

Dr. Miller and my sweet little niece :)
She told my sister that they are already seeing huge differences with this drug. The problem is, she has run out of funding and needs a million dollars more. So, here is my proposal...

In honor of these amazing children that have to sacrifice, fight and struggle so much more than typical children, I am asking everyone reading this to do one thing-turn your desserts into dinero for PWS. Parents of PWS kiddos have to be very diligent and very careful what they feed their kids - starting from birth. My niece has never had a cupcake, cake or piece of candy...and hopefully never will (you can't miss what you've never had!).

my creative sister made Adelaide a watermelon cake for her birthday this year! :)
So let's show them our support by giving up desserts for one week. Anytime you are in the store or restaurant and reach for a bag of cookies - stop! Look at the price, note it in your phone, and don't buy it. Every cent that you save from not eating desserts this week - please donate it to the study. Here's my niece's page where you can donate!  Every time you crave a "sweet", think of these amazing children that constantly "crave" and can't have...
I know it won't be easy - I have a very strong sweet tooth that controls my brain after I eat lunch or dinner :) lol. But for one week, I can do it. And so can my kids!!  Dessert into Dinero...for PWS!!

Update-so my kids are on board :) we have our piggy bank on our table and my daughter earned the first $.50 by eating a bowl of applesauce instead of a half of a gluten free chocolate donut we sometimes eat :)

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