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

Archive for the ‘Videos’ Category

Date: January 15, 2011

Place: Lee’s Summit North High School Field House/ Concession Stand

Time: 12 p.m. – 3 p.m.

Goal: To host a carnival type event to raise money for the Stults family

Lexxi & Kara have graciously organized this fundraiser for our family. They are incorporating it into their DECA marketing project for school and our both seniors at Lees Summit North High School.  Out of all the other things they could have done they choose our family. It all was because my mother had put a flyer out early summer for a fundraiser they held in Lees Summit, MO and they happened to come across it.

We encourage you to attend and bring your family. This is a family oriented event and with the social connections that kids have in school this will be a FUN and great event to be apart of. Please come out and have a great time!

Here is a quick video we put together for Brisan and Parker in regards to promoting Niemann-Pick Type C disease. Many of you might have already seen this on Facebook or from another source.

As your watching the video please think of creative ways you can help spread the message. It might not be monetarily with the Niemann-Pick Children's Fund but it could be through other random acts of kindness. Keep in mind that Niemann-Pick Type C holds a lot of valuable information that could unlock doors to other common diseases that are cholesterol related.

Thank you for taking time to read this post and watching our video.

You can find us on Facebook [ Niemann-Pick Children's Fund ] : Niemann-Pick Children’s Fund

Just a quick video I got of the boys before we gave them a bath. Parker and Duncan love bath time. Brisan would rather go and hide from us! Always glad to see the boys happy when these small things perk them up. As you will see Brisan wasn't too thrilled. He was “hanging out”. (Sorry the video is not on the screen. It just wouldn't budge regardless of what dimensions I inputted!)

View Video on Youtube (if your reading this in an email update)

I was able to get the “dudes” on the camera last night. Of course they had no interest in what I was doing because one of their favorite cartoons was on, The Penguins of Madagascar! Parker started having some bleeding while he was at grandma Carnes's house this week. Yesterday ARJ Infusions Services came out and did another infusion of DDVAP for both of them. They also will both get another infusion on Monday, their regular scheduled day.

It appears unofficially that they will be going to twice a week infusions. That is our hunch at least. Below is a video of the guys after dinner: (if your unable to view via your email update, click here: http://www.youtube.com/watch?v=zoWaslyYsdk)

In the video as you can obviously see ( ha ha) they are both getting a feed through their GT's. Brisan will surprise us every now and then and eat a whole bunch but we need to supplement his calories. Parker loves to eat as well but we want to make sure they have a full belly before they go to bed. Hopefully that will help them sleep.

You also will notice how Brisan really doesn't like to look down at his food (well cookie!). You have to love the vertical gaze palsy!  Either way we love the little guys! Thank you to all for everything. There will never be an action or material item that could say thank you for the prayers, support, and love you've given our family.

Easter was a pretty good day. Me and Jennifer went to church because we were apart of the 11 am service. The message was on Hope. At the beginning of the sermon they had put a picture up of us while one of the ladies from the drama team acted out our monologue about our story. She did a wonderful job and it was surreal to be hearing our story. I hope that it was able to make an impact.

The boys were at Gma's & Gpa's house while we attended church. Typically we go Saturday evening. We had a good lunch followed by hunting for the wabbit! Below is a video from the Easter Egg hunt we had in their back yard. The boys did a pretty good job “wondering” around! HA I think they had fun.

(In case you can't view this video on your email version: http://www.youtube.com/watch?v=CrhfcmcCEWQ)

Parker is just a funny kid! Below is a video we took while we were waiting on Dr. St. Peters to come into the room. He was being silly then as soon as I turned on the camera he stopped!

Overall March 24th is the date that they are going to due surgery. They aren't however going to do a fundo which is relieving for the time being. Now after the GT if he is aspirating or having things come back up, then it will validate if he is really having reflux. This is a completely safe guard (GT) since he loves to eat but he just isn't chewing his food like he needs to. I know we just hate seeing “stinky” or any of the boys go through these things.

During that surgery they will put a line in underneath his collar bone since Parker and Brisan both have had weekly infusions since November 09′. They are getting stuck way too much! This will make life a bit easier for everyone involved.

On another note please pray for Jonathan Fletcher of Independence, MO. He is a 5 year boy who is near his time due to a cancerous tumor inside the base of his brain stem. Pray that God takes away his pain and fears. Even more importantly pray for his parents. We don't want to imagine those feelings anytime soon.