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

Posts Tagged ‘Missouri’

When me and Jennifer first started dating, she took me to a place her family had been going to for quite some time. The restaurant is a Chinese place called Hunan Gardens in Liberty, Missouri. Frankly, it was the first time that I was pleased to eat that kind of food. Before I had no real interest in eating anything other than “meat & potatoes”.

The owner's and staff were always so friendly. They shared with us the times we would visit including the births of Brisan & Parker. Over the years since we've moved about 35 minutes away, we've not been very much at all although we always say it is our favorite “chinese restaurant”.

Brisan and Parker over the years and shortly after Duncan was born, they loved to chow down on crab rangoons and veggies! Brisan when he was still speaking called them “cacoons”. Parker just hoovered his way through carrots and peas!

Since their diagnosis back in August of 2008, we have been coming less and less. Mainly due to the coordination and all the extra effort it is to pack up wheelchairs and the whole “semi like” approach to going anywhere anymore. We had dropped little Duncan off at grandma's and papa's house so he could have some quality time with them. Afterwards we stopped by because it was close.

That was the first time in probably 2-3 years we had been their with Brisan & Parker. Check out the video below on how they are trying to eat some of their old favorites. Due to Niemann-Pick Type C disease, the affects of it all as you can see are weighing in as they struggle to hold and complete the normal functions of eating that so many of us by default take for granted.

Aren't they so cute? Just want to squeeze em'!

Brisan 2009

Just a quick update on what's been going on over here in our household. A few weeks ago we finally started with a new home health care agency for our nursing situation for Brisan and Parker. So far… so good. It is huge to us that we have this type of help. Unfortunately the process of acquiring a new nurse and finding that right person is beyond a full time job. Thus far, the agency has taken a customer centric approach which we haven't had that for years… literally. They just epitomize the definition of customer serve. We shall see, right? ha

Brisan and Parker are out of school now until summer school starts here in next month.  Duncan is just a blast. He just comes up with the funniest stuff. We talked about just making him a basic website where we can post his “Duncanism's” of the day. LOL

You know.. Niemann-Pick Type C disease (NPC) is such a roller-coaster of a disease… like many rare diseases and others that are more common. Everyone wants to know what the “path” is going to look like. Sadly, we just don't know either and explaining what that “looks like” can be taxing. I know for me personally I will say they are doing “fine” because it saves me from some long winded answer. The dudes surprise us everyday whether that is up or down in their situation.

Thank you to each of you for reading and keeping us in your prayers!

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

Just wanted to share these pictures that Mrs. Hall took of Parker and there are some of Brisan when they were in the same class for a time.

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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Wow, it's 2011 already. Seems like we just were starting 2010 and feeling funny about writing “10” on the end of our dates. ha

Christmas was incredible this year and we have so many things to be thankful for! Brisan & Parker started school on the 4th. It feels very nice to be back into a routine of some sorts. I can tell they are happy to. We have some new medications to try this month which is always fun. I think they are walking experiment labs…

Duncan still is being a cute little boy. He walked up to Jennifer last night and hugged her saying “your best mommy'! Ahhhhhh We've been potty training him and he is making progress. Sometimes he would rather hold it. He's getting pretty close to the world record I think… JK.

For our non profit Niemann-Pick Children's Fund, we have some lofty goals this year. We also have some projects to help raise more awareness. No matter what, this all benefits everyone affected with Niemann-Pick Type C. So I hope others in our disease community and other groups realize that.

Thank you for a wonderful 2010 in praying, loving, and keeping us in your thoughts. We're humbled each and every day for the support you truly provide for us!