Brisan and Parker Stults | Living with Niemann-Pick Type C

Posts Tagged ‘Brisan Stults’

Merry Christmas everyone! We hope that you and your family experienced the peace of the day that Christmas brings!

Our Christmas was very good and it was relaxing. We wanted to share Duncan being funny and Brisan having a Dystonia episode. His episodes are much smaller than what Parker has. It was just a fluke I was able to get it on camera as we were not anticipating that happening. Dystonia is one of many side affects of having Niemann-Pick Type C disease.

Learn more about Dystonia.

Brisan’s Dystonia

Duncan’s Holy Cow Moment

Updated Family Photos

Isn’t Duncan’s face totally historical? He was being a little bugger all night not wanting to take pictures but instead play with Wendy’s son. That is ok though… we were able to get a few good ones in here. Also he doesn’t get that kind of action at home although he has two older brothers. We recently had some new photos taken by our good friend Wendy. She is so kind to do this for us!

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Last night, 11-11-11 we held our Vegas Casino Night. The evening was full of different casino games like craps, blackjack, texas hold’em, roulette, and much more. Matthew Lesko was a big hit and everyone wanted a picture with the famous Answer Man!

We held the event at the swanky Hilliard Art Gallery which provided a nice venue for this wonderful evening. The overall turnout was what we expected and the feedback was very positive. This certainly will give us a good building block for future events.

Christina Median of NBC Action news in Kansas City generously gave a portion on her evening to come down to the event. Here is the link for the newscast: Grain Valley family fights to find a cure for rare disease. We sincerely appreciate her and NBC for sharing airtime in helping us spread awareness of the event!

Should have pictures soon.

Thank you to everyone that helped spread the word and equally important, attended our event.