This is Great news!

So, if you haven't heard yet there was a Huge breakthrough in PWS Research yesterday. Basically, some very Smart scientists are now able to research and study PWS live brain cells. (Thank the Lord for them!)

"These cells (which were made by transferring a special set of genes into skin cells from a person with PWS) have the ability to change into a variety of cell types in a dish - muscle cells, pancreatic islet cells, and importantly, neurons. Thus, we now have an ongoing supply of PWS neurons - we can study how their gene expression differs from normal, whether their metabolism is altered, whether neuronal migration and/or interaction is altered, and how their neurochemistry differs from normal. Once they figure out how PWS neurons are different, they can throw some small molecules, existing drugs, new drugs, etc onto them and see if they can get them to behave more like typical neurons. This is an "in vitro" (in the dish) system, so there are some limitations (just b/c a drug works on neurons in a dish doesn't mean it will be able to get into the brain and work the same way), but it gives us so much more to work with than we've had before."

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Trust the process

So, today has been mentally taxing on me. From finishing up my Summer classes and final tests, to losing a dear, fellow PWS Mom friend, and then taking Cade to his first swim practice for the Special Olympics. I've shared extreme highs and extreme lows today, but as I unwind tonight I feel compelled to share this with whoever decides to read it. Some of you may know this about me, but most probably do not. I have always felt a strong attraction to working with those with special needs. It just always felt right and from a young age I remember looking up local jobs and volunteer opportunities..always searching for something to fulfill that desire. I was actually enrolled in college for Family and Consumer Science and was planning to go into Special Education. I had taken the Parapro assessment and actively looking for Para jobs. Then I became pregnant for Cade and life had other plans. Given my role now to Cade, isn't it ironic? OK, so here is an e-mail I dug up from my in...

Happy 5th Birthday Cade!

I can't believe we are celebrating your 5th birthday today. It seems like just yesterday I was awaiting your arrival. Boy, what a whirlwind it has been since then. I have watched you go from a tiny, helpless newborn to a boy who already has his mind made up about just anything. You have taught our family so much about being strong and loving endlessly. You bring opportunities that I never imagined possible when I first held you in my arms. Life-long friendships have been made because of you. I will always encourage you, respect you, be your biggest fan, your advocate, and your supporter. I will always hope for a brighter, more accepting tomorrow. But above all, I will always love you for who you are.

Tired and Thankful

I am the parent of an amazing boy. He is 9. He is smart, funny, and happy. I am the parent of a child with Prader-Willi Syndrome... PWS is a complex developmental disability that results from a defect on the 15 th chromosome. Because of an abnormality in the area of the brain called the hypothalamus, these individuals face challenges in learning, behavior and controlling their appetite. The message of fullness never reaches their brain and they are always hungry. The intensity of their food drive can vary but all require support and understanding if/when they are exposed to food or they attempt to seek food. Food security must be considered and provided in all environments and at all times. While I am first Mom to Cade, just as importantly I am his advocate in every aspect of his life for his rare disorder. I am tired. Remaining humble and thankful for all of Cade's progress is so very hard in the midst of advocating. Some days I feel as I...

Our So-Called Life.

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