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

Posts Tagged ‘Thank You’

One day Parker will stop making eye contact. When he locks his eyes onto ours and holds that for a little bit, it is so precious. They say a picture has a thousand words but that doesn't begin to describe the feeling when he does that for us. Brisan prefers not to make eye contact and will turn his head of nod downward. We will take what we can get!

The joy in Parkers eyes when he is feeling good is indescribable. This morning I told him “thank you” for giving me that warm smile and looking into my eyes. This was all after he had thrown up all over himself during the night and had a severe blow out. I had just given him a bath. This is a daily occurrence in the Stults Family!

Being parents of a child or children with a rare disease like Niemann-Pick Type C or Niemann-Pick in general, isn't the most joyous club you ever wanted to be apart of. I know parents of other rare diseases like this have similar feelings. We are fighters, we have hope but mostly we have a tender heart that is very personal towards the situation. Love doesn't begin to explain the magnitude of our feelings.

Jennifer and I know that those days are numbered. We aren't negative nelly's who think about the down side of what is going to happen but we are human. We have feelings. We're not superman or superwoman 24/7 like some people think outside our home. It makes me tear up after looking into his eyes knowing the outcome for both Brisan and Parker. We hope that our story can positively affect others.

Brisan, the last handful of days just hasn't been himself. We think his ileus came back and he will break into these random crying spells. We feel so helpless for him because the carousing we have attempted just hasn't seemed to work. He is also very tired and rightfully so.

This morning, poor Parker is having his turn like I mentioned above and is running a slight fever. We think he will be ok to say the least!

Hug your family, love your spouse, and say thank you to the Lord!

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!

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Last July 2010, my parents (Mike) helped organize a fundraiser for Brisan & Parker. During that time through mutual friends they were introduced to Hazel Kinder who lives in Columbia, MO. That is about 1-1.15 hrs from Kansas City. During the late 80's through the late 90's she lost 3 of her son's to Niemann-Pick Type C disease.

I can't imagine going through this whole situation during that time when the internet was just getting started and networking to find support with other families. We are thankful that she wanted to be apart of our story and journey.

KOMU.com out of Columbia, MO did a small story on the event.

[ View on Youtube: http://www.youtube.com/watch?v=NBhjENfOSVA ]

We have much to be thankful for this year. We've been overwhelmingly surprised by kindness this month and without going into detail we'd like to say THANK YOU!

Merry Christmas and Happy Holidays!