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

Updated Family Photos

Isn't Duncan's face totally historical? He was being a little bugger all night not wanting to take pictures but instead play with Wendy's son. That is ok though… we were able to get a few good ones in here. Also he doesn't get that kind of action at home although he has two older brothers. We recently had some new photos taken by our good friend Wendy. She is so kind to do this for us!

Brisan

On Thursday of last week, Brisan had an episode where he started to throw up and his O2 stats dropped. It caused his body to go into a seizure and he became pretty unresponsive. In all the things we have seen thus far out of our “bubbas”, he went so lifeless so quickly. We called an ambulance to take him down to Children's Mercy Hospital downtown. It didn't help that the paramedics said his lungs sounded pretty full. Considering all the things we have seen recently in our disease community…this had us on a heightened sense of alert.

Our neurologist told us last week that kids with neurological diseases like Niemann-Pick Type C that their lungs usually what gets them in trouble long term. We certainly agreed with him. Brisan is doing better now. He still has a mean cough/ mucus stuff going on.

Our Thanks

We have many things to be thankful for this year. Each and everyone one of you have shown support in different ways. Your prayers are especially appreciated as those alone are what helps us just manage day to day. We are human…we do get sad that our little men aren't going to have the things in life that all parents dream of seeing out of their children. The realization happens more and more everyday when we have friends in the disease community loose their children, other friends who have children with other related diseases go through their lose, and just looking back at older pictures/ videos of when they had more abilities.