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

It's been a week ago tomorrow evening (Monday) that we were finally able to return home after Parker's crazy situation while in DC. Nothing new has transcribed since we've been back with our doctors. You almost get the feeling that with Brisan's sinus polyps and Parker's blood redirection or loss that no one has an answer.  Leaves you wondering what shall happen next?  Brisan's sinus situation is so bad that it is causing his right eye to matte shut and consistently be weepy. Our new nickname for Brisan is “Pirate Pete”. That is what he looks like! Hopefully we can get somewhere!

Friday  we have an important IEP meeting with the Grain Valley School District regarding the future of the boys. Jennifer will be busy gathering information and coordinating up until then. The meeting will speak to all points hopefully on how they can and cannot fulfill the needs of Brisan and Parker. We also will speak about Duncan going next January to school. . There will be probably upwards of 20 people in attendance to discuss this matter.

Brisan is suppose to start Kindergarten in the fall. After three hours in the morning now he is completely wore out! There is no way in the world the little man can go all day. They would allow him to go a half a day from previous conversations, eat lunch at his own leisure, and allow additional attention to his needs. Many things besides what some would call “minor decisions” for us. The important issue here is safety, the schools funding of the special needs program, and if they can provide for our children. No hard feelings if they cannot.

Some would say that his progress is indeterminable because he has been absent from school a lot. Regardless, Niemann-Pick Type C is already taking it's toll on him and Parker. All we've seen from my recent memory is digression in all areas from quarterly updates.

We feel that there is a better alternative for both boys out there. With a state representative telling us that our school district will be losing  $400,000  in funding in the upcoming school year, this doesn't point to a sign that says they can fulfill the basic needs for our sons.