Posts Tagged ‘Brisan Stults’

Quick Update on the Dudes

Brisan 2009

Brisan 2009

Just a quick update on what's been going on over here in our household. A few weeks ago we finally started with a new home health care agency for our nursing situation for Brisan and Parker. So far… so good. It is huge to us that we have this type of help. Unfortunately the process of acquiring a new nurse and finding that right person is beyond a full time job. Thus far, the agency has taken a customer centric approach which we haven't had that for years… literally. They just epitomize the definition of customer serve. We shall see, right? ha

Brisan and Parker are out of school now until summer school starts here in next month.  Duncan is just a blast. He just comes up with the funniest stuff. We talked about just making him a basic website where we can post his “Duncanism's” of the day. LOL

You know.. Niemann-Pick Type C disease (NPC) is such a roller-coaster of a disease… like many rare diseases and others that are more common. Everyone wants to know what the “path” is going to look like. Sadly, we just don't know either and explaining what that “looks like” can be taxing. I know for me personally I will say they are doing “fine” because it saves me from some long winded answer. The dudes surprise us everyday whether that is up or down in their situation.

Thank you to each of you for reading and keeping us in your prayers!

Share

Merry Christmas From The Stults Family

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

Share

Family Photos and Updates

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!
Stults Family 2011
Read the rest of this entry »

Share

Vegas Casino Night Was A Blast

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.

Share

Challenge: I need 11 Friends

October is amongst us already! Truly can't believe that time is flying by us.

October is the 10th annual national Niemann-Pick Disease awareness month. To help spark up and rally the troops the NNPDF has put together a “Challenge”. Niemann-Pick Type C disease is a extremly fatal disease with no positive outcome at this time so your help is greatly needed.

The Challenge:

The challenge is quite simple actually… Get 11 friends to donate just $11 dollars. Sorry to let you down as you were probably expecting something huge. 🙂

11-11-11 Challenge

Goal:

If the NNPDF can get 111 people to get 11 contacts to each donate $11 then that would be $13,000 that can be dedicated to research. Isn't very much is it? Think again… it all adds up.

 Donate $11 Here

Niemann-Pick Type C is a degenerative nuerological disease that is Fatal. It is the cells inability to metabollize cholesterol therefore causing a domino effect of nuerological problems until ultimately it claims their lives.

We ask for your support! Please share.

Brisan and Parker waiting on bus 2011

Brisan and Parker waiting on bus 2011

 Donate $11 Here

Share

How Niemann-Pick Type C disease Affects The Brain

The Doctors TV Show

The Doctors (2008 TV series)

Image via Wikipedia

Recently this week Kristen and Fernando Lopez attended a taping of the hit TV show's Season 4 premier called “The Doctor's”. There son Gavin has Niemann-Pick Type C disease like Brisan and Parker. We consider them good friends and are so very excited they were able to nab this opportunity. This was an awesome opportunity for our disease community to help spread awareness about this rare disease and hopefully attract the right people that help change the course of this. Below are a few videos from the show.

E.R. physician Dr. Travis Stork explains how Niemann-Pick Type C disease affects the brain. Read the rest of this entry »

Share
Subscribe to our list

Categories
Archives