http://www.youtube.com/watch?v=d2nYsyCcP2Y

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Saturday the14th we are having a “Beach Party” theme at our house for Parker and Duncan. His birthday is January 28^th, so he has to share his together with everyone. I am sure as he gets older he may prefer to have his own shindig.

Last Saturday Brisan decided it would be cool to visit the ER again. I left that Saturday for Las Vegas but the poor kid had not went to sleep the previous evening. That is literally no joke. I think he was preparing for college or some stuff…

He went into the ER for what they discovered was ileus. First time for everything hey? Just a lot of discomfort but we think it he is on the amends.

 “Ileus (adynamic or paralytic ileus) is a type of bowel obstruction that occurs when the intestines stop moving normally even though there is nothing blocking them. This prevents the digestion of food and the movement of waste out of the body.” [WebMD]

Next week Jennifer will graduate with her BS in Applied Behavioral Analysis!

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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

http://www.youtube.com/watch?v=DVE2eTj9VfI

Duncan’s Holy Cow Moment

http://www.youtube.com/watch?v=Ircj3oZyyKI

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1. Very Thankful

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!

Brisan

On Thursday of last week, Brisan had an episode where he started to throw up and his O2 stats dropped. It caused his body to go into a seizure and he became pretty unresponsive. In all the things we have seen thus far out of our “bubbas”, he went so lifeless so quickly. We called an ambulance to take him down to Children’s Mercy Hospital downtown. It didn’t help that the paramedics said his lungs sounded pretty full. Considering all the things we have seen recently in our disease community…this had us on a heightened sense of alert.

Our neurologist told us last week that kids with neurological diseases like Niemann-Pick Type C that their lungs usually what gets them in trouble long term. We certainly agreed with him. Brisan is doing better now. He still has a mean cough/ mucus stuff going on.

Our Thanks

We have many things to be thankful for this year. Each and everyone one of you have shown support in different ways. Your prayers are especially appreciated as those alone are what helps us just manage day to day. We are human…we do get sad that our little men aren’t going to have the things in life that all parents dream of seeing out of their children. The realization happens more and more everyday when we have friends in the disease community loose their children, other friends who have children with other related diseases go through their lose, and just looking back at older pictures/ videos of when they had more abilities.

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We have been very much appreciative of them taking time to share with the public at large about Niemann-Pick Type C disease. It helps spread the word!

Read More Here: http://go-tiny.com/StultsFamily2

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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.

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We are very thankful for their time to spread the awareness of a horrible disease like Niemann-Pick Type C.

Here is the article: http://www.grainvalleypointe.com/?p=4762

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We have a special quest attending our Vegas Casino Night. Matthew Lesko will be in town. Here is the press release that Evans Media Group typed up: http://pressreleases.kcstar.com/?q=node/69623

We are still hoping to sell a good portion of tickets this week. Also challenging is in planning for catering and the beverage area when most folks are choosing to wait at the last minute or even at the door. Now that isn’t being negative because I understand. So we are attempting to move forward and do the best facilitating the event. You can purchase your ticket here: http://www.NPCFund.org/VegasNight.

The Dudes

Brisan has been back to school for about a month now after his August debacle with this health. He has been doing much better. We had an incident about 3 weeks ago where one of our nurse’s was allowing Brisan to walk around  and he somehow fell and fractured his pelvis! We have been trying to keep him off of it as much as possible. I think he may be OK but Jennifer was gone and I was upstairs working when I heard the nurse calling for me. Either way I was upset at the situation because it shouldn’t have happend. I remember when he broke his leg back in 07′… that was a huge turning point and set back for Brisan.

Parker has continually been having his seizures but doing good. It seems like he is quietly slipping away because he doesn’t have the crazy health things come up like Brisan does. Still giving those little smiles and being “mr. stinky”. He doesn’t walk around very well. At home we don’t allow him to try to walk around much. About a month ago I had him stand up and he got a big smile while I was holding his left arm…he dropped like a crumbling tower without any notice. Just can’t have that be happening, you know? At school they both get physical therapy and Parker gets it once a week at Children’s Mercy Hospital.

Duncan is a joy. He seems to display being very intelligent and smart. He picks up on things quickly. He still does have some slight challenges but nothing compared to Brisan and Parker. We’ll take it! Duncan is very imaginative and is loving his Transformers. He was Optimus Prime for halloween.

Gavin Lopez

Our dear friends Kristen and Fernando Lopez of Little Elm, TX lost their little champ Gavin to Niemann-Pick Type C disease on October 30, 2011 around 9am. Jennifer went down this past week to lend her support and love to help them out. Although it is really a preview into our future, they became good friends and it was the right thing to do to show support. It just happen to work out for us to do so. Please also say a pray for their family that they find comfort with their loss.

We lost 3 precious souls this past 1.5 weeks to Niemann-Pick. http://nnpdf.org/aboutus_14.html

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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.

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

 Donate $11 Here

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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.

Gavin and His Mother’s Heartbreaking Story

Words of Hope for Nieman Pick Type C Patients

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