But kids were cruel and adults were worse. Here She told her this very slowly and enunciating each word. My mother shocked, nodded her head, grabbed my hand, and walked out with her blonde-hair-green-eyed daughter. Or maybe it was just in the water? .

Experiences of a family along the journey of Pompe Disease. Sunday, December 4, 2016. Until then, I would like to share a few old posts to remind people of our story. Posted by Matt and Donna Crowley. Turn, Turn, Turn.

What is Pompe Disease? Sanofi Genzyme Includes Vulnerable Kiwis in Their Compassionate Access Program. Current News National and International. Party stances on funding Rare Diseases. Welcome to the New Zealand Pompe Network. This site has been set up by people who. People with Pompe Disease, their families, friends and supporters. We offer support, information, friendship and hope to those affected by Pompe. People diagnosed with Pompe Disease in NZ that we know of.

Wow, 2 posts in 1 day! I got my journal out this morning and decided to start answering some of the 50 Questions that I spoke of in this. But I really want to start actually answering them. While there I found another great post entitled 30 Challenges for 30 days of Growth. 3 If life is so short, why do we do.

Travel, Food and Everything in Between. A blog about my favorite things, and my quest for what I want to do with my life. Wednesday, October 23, 2013. One year ago today, at approximately 5PM Mountain time, my world was shattered and life as I knew it ceased to exist. These life defining moments are stepping stones. The only option is to keep moving forward. I am very blessed with my family and friends, old and .