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

Posts Tagged ‘Liberty’

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'!

Easter was a pretty good day. Me and Jennifer went to church because we were apart of the 11 am service. The message was on Hope. At the beginning of the sermon they had put a picture up of us while one of the ladies from the drama team acted out our monologue about our story. She did a wonderful job and it was surreal to be hearing our story. I hope that it was able to make an impact.

The boys were at Gma's & Gpa's house while we attended church. Typically we go Saturday evening. We had a good lunch followed by hunting for the wabbit! Below is a video from the Easter Egg hunt we had in their back yard. The boys did a pretty good job “wondering” around! HA I think they had fun.

(In case you can't view this video on your email version: http://www.youtube.com/watch?v=CrhfcmcCEWQ)