Archive for the ‘Videos’ Category

Duncan decided he needed to call the police because I wouldn't go get his “bullet” from behind the couch. Take a listen below…

The Doctors TV Show

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Recently this week Kristen and Fernando Lopez attended a taping of the hit TV show's Season 4 premier called “The Doctor's”. There son Gavin has Niemann-Pick Type C disease like Brisan and Parker. We consider them good friends and are so very excited they were able to nab this opportunity. This was an awesome opportunity for our disease community to help spread awareness about this rare disease and hopefully attract the right people that help change the course of this. Below are a few videos from the show.

E.R. physician Dr. Travis Stork explains how Niemann-Pick Type C disease affects the brain. Read the rest of this entry »

On May 20th Parker graduated Early Childhood or better known as Preschool! He was the only one to graduate out of his class this year. We are very proud of him and it is also a sad moment because the teachers have seen Parker and Brisan both grow up in their classrooms. He is such a cutie and he diffidently earns his nickname “stinky”. I purposely put him in his shirt that has Charlie Brown on it saying ” I do my own stunts”. This is all very true. Brisan's graduation from Kindergarten will be this upcoming Friday.
Read the rest of this entry »

Parker lately has been having gelastic cataplexy attacks very frequently. We've had both Brisan & Parker on medicine to help this but the last 3-4 weeks Parker seems to be reacting differently to the changes Niemann-Pick Type C is placing on his body. This is all to be expected.

Parker laughing is a joy to watch because he is so innocent with his sweet soul. The bad part is when he does start this laughing “fit”, it creates a loss of muscle control & tone. He essentially becomes a noodle and falls. Saturday (1/29) he was out of his chair getting a diaper change and he stood up for a few moments and then accidentally fell into the corner of the wall gashing his head open. We've been trying to get video of him trying to walk and when he has these cataplexy episodes. Hard to plan for those things…

Sadly we have to keep him and Brisan more in their chair although we hate doing this. The other challenge is we can't be a 100% of the time hovering over both of them to keep them safe. It just isn't possible and especially with a little squirrelly three year old running around.

Starting on the next school day (depending on when that will be with all the snow expected tonight), we will be sending Parker to school with his wheelchair just like Brisan. Now that doesn't mean he can't get out and roam around but it will provide a safe haven for when he is unstable. This has worked well for Brisan at school. It just takes one good fall to do some serious damage. You and I don't think much about this because we typically have enough control to protect ourselves on a fall. It would be like free falling out of the sky and hitting the ground. There is nothing you can do to soften or protect yourself from the impact.

Last week Parker fractured his nose (1/22) because he fell. That all happened within a matter of minutes.

Here is a video we shot on Sunday (1/30) showing Parker laughing. He was going really good earlier before I grabbed the video camera to record. You'll notice he has a couple good head drops along with the vertical gaze palsy (issues with moving the eyes up/down/side to side. the “awkward” eye movements.) Plus the poor kid needs a hair cut????!!!!

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.

Happy birthday to Parker & Duncan! Parker turned five this month and Duncan turned the big three!

Here is a video from their party. I was going to say short video but it is much longer :).

Thank you so much to all that came out even with all the snow! They both had a great time. Also thank you to Lee & Julie Bailes for taking pictures (will update this post as soon as we have them uploaded to get on here).

[ View on Youtube: http://www.youtube.com/watch?v=_hGZCnfvFsU&hd=1 ]