Posts Tagged ‘Brisan Stults’

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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The last few weeks we have been searching for a full time registered nurse for Brisan and Parker. A long story short we decided to do away with our health aide and with that meant we had to find a new agency if we wanted to go with skilled nursing. Currently the agency that is assisting us has stated they have had trouble finding a person that would be willing to work the 1-9pm shift Monday through Friday. Read the rest of this entry »

Just wanted to share these pictures that Mrs. Hall took of Parker and there are some of Brisan when they were in the same class for a time.