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

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Brisan + Duncan + Parker | November 2013

We have had a few requests for the video of the service and also a copy of the eulogy that I gave at Brisan's funeral. What is most important to note is I had an abundance of people lifting me and our family up that knew I was going to speak. The majority of our support and family/ friends did not know this. I asked the Lord to help me, to give me strength and courage, and to guide me to deliver a great message. More importantly… get through it!

So glad that I had the opportunity to do so BEFORE all the video's and songs; otherwise may not have been able to finish and plan c would have been in affect. I so badly do not want to take credit. I just wanted God to use me.

The “Moment”

Over the past 4-5 years, I've had a handful of times that this moment of inspiration and excitement played through my head. I spoke about this in January to someone and before that it was at PV Family Camp last May 2013 that I “felt” motivated. That “moment” was always centered around on a stage, in front of a crowd, but the message was fuzzy. Wasn't for sure what that meant other than the “outcome” of the message was meant to be inspiring and motivational. Another one of those moments of…I did not think this was the moment (Brisan's Funeral). When we were in the planning meeting with our pastor, he asked “do you have a good friend or someone that can do Brisan's eulogy?”. With all of us looking around, I finally spoke up and just shared that “vision” (dislike saying that word in this situation). With talking through it, it seemed that this was my mission at hand. Later that night I started to put the “pen to the pad” or in the 21st century terms… the “finger to the ipad”.

Funeral Service For Brisan

(around the 12 minute mark the service begins) (**Feb 2015 I had to update the video. I've updated the below. I had to remove the intro of the video)

Services were fantastic. There are soooooo many people to thank! Beautiful outcome, weather, and just about everything minus Brisan physically being here. With everything said, more than ever will myself and our family continue to need prayer and support. Sadly we have round 2 with Parker. I just hope his time isn't as quick.

Download: Word Doc of Eulogy Read the rest of this entry »

4 years ago today, we were summoned by an out of the blue phone call from the doctor asking us to come into see her. Of course we knew that wasn't good news considering we had been waiting over 10 weeks for either a “yea” or “ney” for Niemann-Pick Type C disease.

Watching the Olympics is interesting because at that time 4 years ago, the Beijing Summer Olympics were having their opening ceremonies while we received the news. That day was really like watching a movie. It was very surreal like and any parent with children of a rare disease potentially would describe that day they learned of the diagnosis of being of similar feeling.

Isn't life funny how we have a black and white definition most of the time but we complicate it to add different shades of grey? It is easy to say that we will take the higher road and be nothing but positive and encouraging. All though this is very inspirational and true, you and I are still human. We have feelings… we have emotions. When you start to get close to others in your disease community and the disease claims their life, you seem to be hit with bit more of a reality that your future will look the same. Others may not view it in this manner and everyone is going to deal with it differently. We as parents can offer advice until the cows come home but sometimes that isn't the answer. For us, we fail every day to make sure the Lord is in control and seek his guidance first.

Thank you to each and every one of you that has stood by our side, shown support, and lifted us up in prayers. It is because of you that we get through each and every day with the help of others.

A tad bit behind on getting this posted up but wanted to share the link to the article on the 2nd half of the story the Grain Valley Pointe Newspaper written by Chris Fischer.

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

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.

The Grain Valley Pointe Newspaper did a follow up story on our family since they first visited with us back in 2009. Chris Fischer is doing a 2 part story on the follow up.

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

It's been about a month since we last updated the world as we know it. For our 501(c)3, the Niemann-Pick Children's Fund, we have been busy trying to orchestrate our Vegas Casino Night on November 11, 2011 at the Hilliard Art Gallery in the Crossroads district of down town Kansas City, MO. Challenging at times because we are already fighting an uphill battle with a disease that no one particularly knows about. It could be better if the boys had cancer or something because more people would understand much faster. When people ask, it is hard not to give a slightly longer answer to “what is it?”. I know people close to us have a slight difficulty answering that question because they aren't as versed in the subject as me and Jennifer. That is quite OK. It isn't something we should necessarily be experts in. You know? We are thankful for those of you that show us support.

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