Archive for the ‘Brisan’ Category

The Grain Valley Pointe Newspaper did a follow up story on our family since they first visited with us back in 2009. Chris Fischer is doing a 2 part story on the follow up.

We are very thankful for their time to spread the awareness of a horrible disease like Niemann-Pick Type C.

Here is the article: http://www.grainvalleypointe.com/?p=4762

It's been about a month since we last updated the world as we know it. For our 501(c)3, the Niemann-Pick Children's Fund, we have been busy trying to orchestrate our Vegas Casino Night on November 11, 2011 at the Hilliard Art Gallery in the Crossroads district of down town Kansas City, MO. Challenging at times because we are already fighting an uphill battle with a disease that no one particularly knows about. It could be better if the boys had cancer or something because more people would understand much faster. When people ask, it is hard not to give a slightly longer answer to “what is it?”. I know people close to us have a slight difficulty answering that question because they aren't as versed in the subject as me and Jennifer. That is quite OK. It isn't something we should necessarily be experts in. You know? We are thankful for those of you that show us support.

We have a special quest attending our Vegas Casino Night. Matthew Lesko will be in town. Here is the press release that Evans Media Group typed up: http://pressreleases.kcstar.com/?q=node/69623

We are still hoping to sell a good portion of tickets this week. Also challenging is in planning for catering and the beverage area when most folks are choosing to wait at the last minute or even at the door. Now that isn't being negative because I understand. So we are attempting to move forward and do the best facilitating the event. You can purchase your ticket here: http://www.NPCFund.org/VegasNight.

The Dudes

Brisan has been back to school for about a month now after his August debacle with this health. He has been doing much better. We had an incident about 3 weeks ago where one of our nurse's was allowing Brisan to walk around  and he somehow fell and fractured his pelvis! We have been trying to keep him off of it as much as possible. I think he may be OK but Jennifer was gone and I was upstairs working when I heard the nurse calling for me. Either way I was upset at the situation because it shouldn't have happend. I remember when he broke his leg back in 07'… that was a huge turning point and set back for Brisan.

Parker has continually been having his seizures but doing good. It seems like he is quietly slipping away because he doesn't have the crazy health things come up like Brisan does. Still giving those little smiles and being “mr. stinky”. He doesn't walk around very well. At home we don't allow him to try to walk around much. About a month ago I had him stand up and he got a big smile while I was holding his left arm…he dropped like a crumbling tower without any notice. Just can't have that be happening, you know? At school they both get physical therapy and Parker gets it once a week at Children's Mercy Hospital.

Duncan is a joy. He seems to display being very intelligent and smart. He picks up on things quickly. He still does have some slight challenges but nothing compared to Brisan and Parker. We'll take it! Duncan is very imaginative and is loving his Transformers. He was Optimus Prime for halloween.

Gavin Lopez

Our dear friends Kristen and Fernando Lopez of Little Elm, TX lost their little champ Gavin to Niemann-Pick Type C disease on October 30, 2011 around 9am. Jennifer went down this past week to lend her support and love to help them out. Although it is really a preview into our future, they became good friends and it was the right thing to do to show support. It just happen to work out for us to do so. Please also say a pray for their family that they find comfort with their loss.

We lost 3 precious souls this past 1.5 weeks to Niemann-Pick. http://nnpdf.org/aboutus_14.html

The Doctors TV Show

Image via Wikipedia

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 »

Jenn took Brisan back into the ER this evening. The last few days he has been very restless. He just had that look in his eyes that something wasn't right. This evening his skin was looking very “marbled” and his knees had swelling with redness (very warm to touch). Jenn stated this was similar look he had when he went into septic shock. Whatever infection he has been fighting (blood related) sure is giving everyone a run!
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Today Brisan turns 7 years old! Happy birthday son!

Unfortunately for him he has been in the hospital since Tuesday August 23. Tuesday morning he had thrown up a few times and developed a swollen jaw on his right side. Later in the afternoon he started to go into septic shock and was turning grey. I was in New York for work and it wasn't easy to try to get home quickly. Those were critical hours and was told that this could be it.
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Brisan, Parker, and Duncan started school today! Although last night someone decided to sabotage half of the 46 school buses for the Grain Valley School District that prevented most of the students besides the special needs students to have bus transportation.

Brisan started 1st grade today! Parker started kindergarten and Duncan started as a peer model!

Here are some pictures to share with everyone:

Brisan and Parker waiting on bus 2011

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