Archive for the ‘News’ Category

Oh Parker!

Parker Thinking

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 ! ūüôā 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!

Share

Woman Lends Hand In Tragedy | Stults Family

Last July 2010, my parents (Mike) helped organize a fundraiser for Brisan & Parker. During that time through mutual friends they were introduced to Hazel Kinder who lives in Columbia, MO. That is about 1-1.15 hrs from Kansas City. During the late 80's through the late 90's she lost 3 of her son's to Niemann-Pick Type C disease.

I can't imagine going through this whole situation during that time when the internet was just getting started and networking to find support with other families. We are thankful that she wanted to be apart of our story and journey.

KOMU.com out of Columbia, MO did a small story on the event.


[ View on Youtube: http://www.youtube.com/watch?v=NBhjENfOSVA ]

Share

Catch Up | Brisan and Parker

We haven't wrote for a few weeks. I went out of town for work last week and Mr. Parker on the 8th turned the BIG # 5!

The new year has started off well. Things for work (Mike) have been going well and progressing nicely. Jenn has started her master classes for school. I know she is so excited (minus the homework). Still trying to find suitable insurance but the price tag is very scary. It is well more than our mortgage yet we know we have to make a decision as soon as possible.

Brisan has been doing much better but he did develop a rash around his port-a-cath this week which caused us not to be able to access his port for their DDVAP infusions this week. On that note…looks like they have made arrangements to keep the supply of the drug to us :). Thank you for your prayers! The rash is essentially a yeast infection. You don't want to risk injecting that into the bloodstream because of the risk of all kinds of non fun stuff for him. We are applying topical and an oral medication to get through it. Brisan is a funny boy…. cute as well. He doesn't like to take a nap and we are glad he is being ¬†himself since we've got a hold on that previous eye infection.

Mr. Parker… oh Parker! We should be getting his new wheelchair anytime (like six months later). It is identical to Brisan's but his will be blue. Still issues with bleeding but they are much more¬†controlled. Now that doesn't mean we can tame him during the times we need to get the bleeding to stop :(. He has been enjoying school but you can clearly see his struggles walking and transitioning to different services. End of last week I went up stairs to check on them and he was stuck on the floor in¬†between¬†his bathroom door and the hallway. ¬†¬†He doesn't know how to compensate to get up since he couldn't lean forward to gain leverage to be able to do so.¬†Hard to imagine that 5 years ago we were blessed to have him!

Duncan's 3rd birthday is upcoming on the 28th this month! This boy is something else…oh wait, maybe normal for the most part? He never ceases to amaze us. One day I came down from upstairs and he said “Hi Dad, whats up?”. LOL We've been working on potty training with him. I think he owns more underwear than all females combined on our block. It's like he needs to make a fashion statement!

Duncan was evaluated for potentially going into a pre-k class like Parker but the school district is saying he isn't smart enough to be a peer model yet not “dumb” enough to be apart of the program. (No that wasn't there exact words). We felt he should qualify based upon other areas. He¬†especially¬†has two older brothers that are poor models for him to interact with. We would like to get him around other kids his age as much as possible. It would be nice if we didn't have to work to be around him all day and just have a blast with them all!

Thank you again for everything!

[cincopa AwAAEbaOqDwD]

Share

BriParDun Carnival of Fun At Lees Summit North High School 1-15-11

BriParDun Carnival Of Fun

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

View Video: http://youtu.be/Vg35HQXQZiw

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!

Brisan & Parker Stults at Nelson Atkins Museum

Share

Video of Brisan & Parker | Niemann-Pick Type C

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.



[ Video link: http://bit.ly/egmBKX ]

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

Share

Brisan With His Birthday Swing

Many of you who attended Brisan's birthday party back in late August should have received a thank you card :). Just wanted to share a few pictures of the swing we got him. Everyone was so generous that we had more than we needed and we choose to buy him an ipad. He has enjoyed watching his movies on it. We also have a few applications on there that he can use. It has been and will be a huge life/ time saver for us.

Not quit for sure if he enjoyed being on the swing or even swinging but I think he started to like it after a bit. I know Duncan and Parker enjoy it! Oh…and Courtney our neighbor's daughter. She is a cutie pie. Duncan always says “Courtney backyard”. LOL

Brisan in swing from his birthday

Brisan in swing 3

Read the rest of this entry »

Share
Subscribe to our list

Categories
Archives