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

Archive for December, 2010

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!

Date: January 15, 2011

Place: Lee’s Summit North High School Field House/ Concession Stand

Time: 12 p.m. – 3 p.m.

Goal: To host a carnival type event to raise money for the Stults family

Lexxi & Kara have graciously organized this fundraiser for our family. They are incorporating it into their DECA marketing project for school and our both seniors at Lees Summit North High School.  Out of all the other things they could have done they choose our family. It all was because my mother had put a flyer out early summer for a fundraiser they held in Lees Summit, MO and they happened to come across it.

We encourage you to attend and bring your family. This is a family oriented event and with the social connections that kids have in school this will be a FUN and great event to be apart of. Please come out and have a great time!

On Monday Brisan was having troubles with his seizures and his right eye started to look funky again. I think we might buy him an eye patch so he can be a full time pirate if need be. Here are a couple videos we took last night. One of Duncan being silly and a complete cheese ball saying his name, trying to count, and how he has his underwear on backwards.

Also have Brisan getting his treatment done on his G-Tube site. He has a fungus around it and the skin is pretty broken down around the area. You will see we have him in a “onesie” that we cut a hole above his G-Tube. The onesie is so he won't “play” with his diaper as much but it totally gets in the way of doing his feeds/ medicine. This is the new regiment minus the cleansing wash we have to do recommended yesterday by the doctor. Interesting enough Medicaid paid for most of the supplies but something little that typically would be covered they did not. This is messed up with no private insurance…well at least affordable health insurance. We know the future will be better at some point with this issue but we have to “move along” as needed.

Well good news…Brisan and Parker will have their Desmopressin (DDVAP) infusions until the end of the month (for their bleeding problem). Our infusion company and our hemoc doctors are working very hard to find the “goods'! We don't know what will take place after the beginning of the year though. Still good news.

The boys have been great this week. Nothing major to report (thankfully). Duncan did have his evaluations to see if he would qualify for ECSE (school). He has been progressing much better so it is a 50/50 shot we get in the door we are guessing.

Thank you for all your support.

Here is a quick video we put together for Brisan and Parker in regards to promoting Niemann-Pick Type C disease. Many of you might have already seen this on Facebook or from another source.

As your watching the video please think of creative ways you can help spread the message. It might not be monetarily with the Niemann-Pick Children's Fund but it could be through other random acts of kindness. Keep in mind that Niemann-Pick Type C holds a lot of valuable information that could unlock doors to other common diseases that are cholesterol related.

Thank you for taking time to read this post and watching our video.

You can find us on Facebook [ Niemann-Pick Children's Fund ] : Niemann-Pick Children’s Fund