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

Archive for the ‘Updates’ Category

Man time really flies. It is so hard to believe that in this past few weeks we have celebrated Parker’s 7th Birthday and Monday is Duncan’s 5th Birthday. It seems just like yesterday we were bringing Parker home from the NICU and Duncan from the hospital. As you all know I go BIG for Birthdays around here. We had a “Jenn style” party for both Duncan and Parker last weekend. The theme was “the Lorax”. I have to say that I think this was one of my favorite parties yet. We had a great time with our friends and family even if there was like 60 people here!

The Lorax Party for Parker & Duncan – 2013

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We wanted to tell everyone Merry Christmas! We have been appreciative of your support, prayers, and love you've shared with us! It is hard to believe we are entering 2013. The boys have been doing O.K. recently. Brisan is officially home bound from school until we look at the circumstances again in the spring. Parker lately has been having a lot of seizures :(. Duncan is a man on a mission with his “barines” (marines) and “army guys”….

Merry Christmas 2012

This year we celebrated Halloween with our small group from church. For Brisan and Parker this was their first year out since 2008. Either someone was sick, in the hospital, or it was way too cold to have the big boys out. Duncan was getting so excited leading up to the day!

Brisan was a Tank!

Brisan Stults – Tank Wheelchair

Parker was Ratatouille and his was a Stove Top Wheelchair! He kept trying to kick it off his tray. HA

Parker as Ratatouille with his Stove Top Wheelchair

Then Duncan was Darth Vadar! His little buddies Seth & Keegan were apart of the “force” as well.

Duncan as Darth Vadar

All this was possible because of Jennifer's hard work and creativity. Overall we had good fellowship and Duncan had so much candy in his “satchel” that he was wobbling. He tapped out because he was pooped!

Today Brisan turns 8 years old! Hard to believe that we have a big guy already! We've been so blessed to have Brisan. We hope we have may more with him!

On Sunday, 8-26-2012 we had the pleasure of meeting Havliah & Guy from Minnesota who were driving through back home. They have a little guy Mason who also has Niemann-Pick Type C disease. We were very appreciative that we had the opportunity to spend a few hours with them over lunch!

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.

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'!