18Mar
I wanted to post an update for everyone that comes to this site we have for the boys. I’ve taken a long time to “pull the trigger” in redesigning www.BriParDun.com because we had many people linked to our site but at the time wordpress didn’t have a solution to account for “.html” on the links (not one I at least knew of or could find). They’ve now have made that an option that allows us to preserve links on our site that other people have.
It is still a work in progress and the plans our to update that blog as the main point of communication with everyone that is so loving and caring for our family to receive updates. Make sure to sign up for email updates so you don’t have to keep coming to the site and checking manually!
So keep an “eye” out for new posts on that site!
Thanks again!
Mike
Tags: BriParDun.com, Brisan Stults, Duncan Stults, Jennifer Stults, Michael G. Stults, Niemann-Pick Type C, NP-C, NPC, Parker, Parker Stults
24Jan
Well the first almost eight weeks of the boys taking NAC are almost over. We head out to the NIH on Jan. 28-30th to review thus far. They get to have a six week washout period starting next week and we are very excited. After giving Brisan 40 ml three times a day and Parker 36ml times a day for that time were not at all sad to have a break from the tedious work.
We get a lot of questions on how the boys are doing. I am glad that we do! It is always hard to answer because how do you relate what seems “normal” to us but really isn’t typical in other people’s eyes. How do you establish the difference in words? Brisan has been dealing with a cold/ now his sinus in his right eye. His sinus cavity is so full of polyps that we would have to do surgery every other week to remove them. Some days he just looks like a mac truck hit him! Wednesday Jenn had to take him to the ER because of seizures.
Parker just needs to be put into bubble wrap with an oxygen mask because he seems to be falling down a lot more. It is almost like his head is to heavy so when he attempts to run (which seems to be every time) he is having his body weight all shifted forward which makes him unstable. It is kinda of funny to watch him pretend to be a pirate or a fiery ball of energy. Like this week he fell down going into school and scraped his nose and guess what? He had a nose bleed!
They both have been having their weekly infusions of DDVAP. So far so good but those poor lil dudes are getting poked way too much. I don’t get to see nor deal with it because I am now working out of an office close to the house. I know they don’t like it and I know Jennifer and I feel helpless. It is certainly out of our hands.
So 2010 brings an interesting start. Unlike last year where we could pay our insurance deductible all up front because of the expensive Zavesca medication. Now we have to earn it the old fashion way this year. What I mean is we can’t just write one check and were good for the rest of the year (The cost was so much the deductible was met instantly and allowing us to owe that to one company not several). The unknown is how much additionally will we rack up in trying to meet that deductible in visits/ costs . A little nerve racking because dealing with either Humana or Medicaid is like dealing with mob, you seldom get your way with them. I would think we will have “degree’s” in insurance by the time we all done dealing with them.
At church last night we talked about if you knew how long you had left to live what “margin” would you leave in your life for the most important things? Certainly made you stop and think. How many times do we put things off because we can “make up the time later”. Something I found funny was when you arrive at the end of your life you can’t say “wait a minute I saved 6 months of life, I’m not ready to go!”. So if we can give the first 10-15 minutes of our day to God and say your welcome today in my life then it should help you more. That was comforting to know that something that simple could help the other aspects of our live even more.
Tags: Brisan Stults, Parker Stults
04Nov
Brisan, Fundraiser, Jenn Stults, Michael, Michael Stults, Mike & Jennifer, News, Niemann-Pick Type C, Parker, Updates, Your help is needed
What is Niemann-Pick Type C? Here is something to put it into perspective. “Dementia is something usually associated with older people. However, children, teenagers and young adults can experience dementia as a result of a number of rare diseases and conditions. Niemann-Pick Disease Type C (NPC) is an example of one of these diseases, and one of its main symptoms is dementia.”
Calling all scrapbookers! Do we have a treat for you this month!
Crop & Shop Fundraiser will be benefiting the Stults Family of Grain Valley, MO! This will be a fun filled day of scrapbooking, socializing, shopping and good times! There will be door prizes and lost of fun! Don’t miss out! Register before November 17th and receive a complimentary goody-bag!
Saturday November 21, 2009
10am-5pm
Faith United Methodist Church
1950 Eagles Parkway Grain Valley, MO 64029
Driving Directions Here
Contact Stacey Perry @ 816-847-6856 or email mands_perry@sbcglobal.net
Tags: Brisan Stults, Fundraiser, Grain Valley, Jennifer Stults, Michael Stults, MO, Niemann-Pick Type C, Parker Stults, Stacey Perry
02Oct
Benefit for Brisan and Parker Stults
Parker Stults, age 3 and his brother Brisan Stults, who just turned 5 years old, were diagnosed in August/September 2008 with a rare genetic neurodegenerative disease called “Niemann Pick Type C Disease (NPC),” also known as “Childhood Alzheimer’s.” The outcome is fatal. www.bripardun.com
Friends of the Stults family are hosting a Texas Hold’ Em Poker Tournament to benefit Parker and Brisan. Funds are needed for current and future medical costs as well as the funding of more research for this horrible disease for which there is no cure.
We will pay out the top 10 places (cash and non-cash prizes will be awarded). A cash bar will be available during the tournament as well.
To register for the tournament, please contact:
Mike Garcia – mikegarcia@kc.rr.com
Jenna Garcia – jainsworth2@kc.rr.com
Phone: 816-506-2888
Entry fee collected upon registration.
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