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

Posts Tagged ‘NPC’

There are days we all remember very well over others. Wouldn't you agree? There are some that we would like to forget about and then some we wish we could always remember. We typically remember the worse ones more than the glorious ones. At least, that is how it feels at times. August 8th is one of the days remembered for Brisan and Parker's diagnosis of Niemann-Pick Type C. It set a different tone and path in life altering what many families think isn't even possible to happen to them. 11 years ago today, we received that horrible news of what laid ahead.

Reflecting back to 8/08/08, it was very surreal to be in that room to hear that Brisan has NPC. Then to hear that Parker is basically following in his footsteps. They were just bouncing around like typical 2 and almost 4 year old boys for the most part. Boom…..Here it was… been waiting since May 21st to finally get the news and we get a call this morning to come down early afternoon for what seemingly was out of the blue. Truthfully, it was a call that no one wanted to take place, frankly. The big unveiling of news yet there was nothing to celebrate. For myself, it was as a defining and pivotal moment but honestly you could say for the whole family as well. One that produced a resonating ripple effect that spread far and wide in both positive and negative ways.

It has been 5.5 years since Brisan has gained his eternal life and went home. 4.5 years for Parker. Even that seems so strange to contemplate upon. 5 years is a long time in reality because so much happens during that time in which we all can surely agree.

We love you guys! It was such an honor! You have so many cheerleaders that have never got to meet you but your legacy has lived on through so many people. You made a difference without ever knowing!

If you know of any families that are going through a crazy medical crisis of a relatable disease, I encourage you to ask how you can help in the most simplest of ways. Even at that, the families don't always know either. So don't be taken back if you are not taken up on the offer quickly. They are so deep into the trenches that they barely come up for air. Maybe a small gesture will leave a life long blessing you'll never know about. Be patient and give them grace during those moments.

Matthew 19:14
But Jesus said, “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven.”

On May 27, 2011 Brisan Stults graduated Kindergarten! He wasn't too happy as you can tell because he wanted to stay in his chair. Kate his trustee sidekick and nurse…mainly his buddy wanted him to walk in with his class. The backpack he is wearing has his feed supplies and pump because he was in a middle of getting some food in his belly. Below is the video of his graduation and a few parts from the class ceremony.
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Parker At KCI Airport

Can you believe it is mid February already? About 3 weeks ago Parker received his new chair and he seems to really like it. I say me and Jennifer like it to ! 🙂 He has been having issues with his balance because of the cataplexy. When we let me out of his chair he starts to giggle then it is “man down”. That has been our little joke in the house if him or Brisan falls down. Not that them falling down is funny because it is some serious business. They get hurt, break noses, and just look like they got in a bad bar fight.

It is hard to see these kind of things because it means Niemann-Pick Type C (NPC) is really doing it's dirty business. When you first see the boys you kinda of think they look “OK”. Then you interactive with them and it is all apparent. We contemplate what it would be like if they were just more typical kids their age. What would they say, do, and their activities. What would their voice really sound like? They are very sweet and we do know their voice but it is so few times we get to hear it more everyday.

We are very thankful for every single person that comes to our website, donates, and especially lifts our family up to the Lord. It is hard to stay focused when your pulled in so many directions to keep the Lord the main priority. I mean giving him every single piece of your life. In retrospect if this was all meant to be easy with or without this disease in our life, would we really develop the appreciation for his grace? Would we develop the since of gratitude that his blessings provide? It is about continuing forward and being thankful in every little way. Thank you!

Hi all, I know normally I am not the one that blogs but today I am. As I am sitting here in this blizzard watching the snow fall, I am thinking about Brisan and Parker. I often think about what they would be like if NPC was not taking them away from us. Would they be begging me to go outside and play in the snow like Duncan? Would they be watching the TV to see if school is canceled tomorrow? While Duncan is excited about the snow and spending time with Mommy and Daddy, Brisan and Parker really have no idea. But that is just our reality. They don’t even know what snow is anymore and don’t say Mommy or Daddy and have not for a long time.

Brisan and Parker Laughing

I find myself having a hard time dealing with this “reality”. I know in my head that everything happens for a bigger picture but when you are in the forest it is hard to see anything but the tree in front of you. But when you take a step back that is when you can see the whole forest and the bigger picture. I was once told that there is light at the end of the tunnel and it is not a train.

As I have been talking with some friends on facebook, I am slowly starting to learn thatI have to ask for help when I need help, I have to allow myself to feel these feelings and I have to rely on those that have sadly gone before me. None of those are easy for me to do. I am a very planned and organizing person. But let’s face it, Niemann-Pick Type C has a plan of its own and is not organized like I wish it was.

On a good note, we have a new member of the family, Jenna. Jenna is our new personal health aid that is working with the boys. I have to say that she is great with the boys and she loves them as her own. That is exactly what we need. She is always asking us questions, wanting to learn more and more about them, their story and NPC. More that I can say for 98% of the ones in the past.

While I am very sad at our crazy daily life, it for some reason makes me want to fight even harder. This is where we need help. We know that we can’t fight this battle alone. We just can’t. We need your help, awareness is key. If we can save one other family from having to even know what NPC looks like then I would feel successful. I have heard several times lately that I am NOT Super Woman and Mike is not SuperMan. (That also doesn't mean I wont try though.) There has to be some way to make Brisan and Parker’s life better than it is already and also find a cure/ treatment for this monster. That being said, I think we may do some finger painting today with all three boys.

I’ll let you know how it goes.

Last note, “The King has one more move!” I don’t know what it is but I have to trust in him and know that it is all for His glory and Brisan and Parker will and are making adifference in this fight against NPC!

Monday night we had to take Parker into the ER because he spiked a 103 degree temperature. One of the main concerns with them getting their port-a-cath is if they do develop a temperature then we need to have them taken in immediately to make sure that there is no infection of the blood taking place. If that ever did happen…that wouldn't be fun for anyone involved especially the little men!

The blood culture takes a few days to get back so there was no diffident conclusion last night. The biggest shocker is that he has lost 6 lbs! He is down to 37 lbs which he hasn't been for a super long time! For a kid that loves to eat…

Thank you to everyone that has kept us in your prayers!

This week has flown by! While our yard is developing it's jungle tendencies, both Brisan and Parker have had issues this week with mucas and drainage. They were coughing like they where standing on jack hammers every morning. Many of you know that for Brisan this is always an issue because of that life long sinus infection he has! I sure hope we can figure out these polyps in his nasal cavities.

On Tuesday Duncan had somehow hurt his knee so Jenn was instructed to take him into the ER. He seems fine now and maybe just accidentally bumped it pretty good.I think it might be a case of being a “boy”.

Starting this week through a program called Carousel which is palliative care for serious ill children, we have a registered nurse that comes a total of four hours a week. That will be nice to have because if something is pretty urgent then they can come over anytime we need them. We also have a social worker that also will come by. Also let's not forget the dietitian every few weeks to check on our needs if any at that time. Brisan and Parker will also get music therapy every few weeks too! That should be fun for them!   I laugh because if you turn on MTV or something like that…they all just kinda of stair!

Oh yeah…the van overheated pretty good. Looks like the head gasket needs to be replaced. 🙁

This weekend there is a softball tourney called “Battin' for Batten Disease” First Annual Softball Tournament. It is a very similar disease as Niemann-Pick Type C but strikes very quickly. We have a friend who's daughter is affected and not doing well who arranged this. Doesn't matter who you are….arranging fundraiser's isn't for the faint of heart!

Thank you to everyone for keeping us in your prayers. It is truly your caring and support that helps us because we know I'm not superman and Jennifer isn't superwoman!