Wednesday, October 29, 2014

Life of Dan - Life After Diagnosis

For Niemann Pick Disease awareness month, I wanted to post a few videos.  Many people who read this blog never met Dan when he was "healthy" and many never met him at all.




This video was taken in July 2011, about one month after we received his NPC diagnosis.  You can see that he still knows my voice, but has trouble picking his head up, using his arms and hands, is drooling a lot, and has lost most of his sounds.

We tried to keep him engaged in activities and things he enjoyed as much as we could.  His mental capacity has probably diminished and his motor skills were significantly declined.  We didn't have any special equipment or support - no specialized stroller, wheelchair, high chair, or bed.  We didn't have any financial or family support.  It was just the 3 of us.

In just a few short months we went from a child who could at least crawl, to one who couldn't pick his head up.  We also spent 3 weeks in the hospital and weren't allowed to get him out of bed, so I think the muscles weakened which hastened the disease progression.


You can see the other videos of Dan here and here.

Monday, October 27, 2014

5 For Five - Oct 27

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:
1. Read newspapers through June 20.  Nope.  Got through the 14th.
2. Finish clearing out the expired coupons. Partially completed.
3. Find the flannel crib sheets, which I think are in Dan's room. Looked everywhere and can't find them, so I think I sold them.  But a success because I looked!
4. Continue publicizing my October fundraiser. Done!  And continuing this week too!
5. Finish my phone cleanup and get rid of stuff I don't need. Another continuing project.



Not a great week.  I did some things.  So what are my goals for this week???

Friday, October 24, 2014

Five Faces of Niemann Pick Disease - Week 4

It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here.

 




 

Wednesday, October 22, 2014

Life of Dan - NPC Taking Hold

For Niemann Pick Disease awareness month, I wanted to post a few videos.  Many people who read this blog never met Dan when he was "healthy" and many never met him at all.



This was taken around age 4.  As you can see Dan still cannot talk and now is having trouble getting to a standing position.  You can compare this video to the others here and here.

One of the hardest things is looking at these videos so many years later.  At the time you see some of the decline, but you don't realize the extent until many years later.

When I was watching this one, I had tears streaming down my face.  You can see how normal Dan looks, generally, with the exception of being able to get to a standing position.

This is what NPC does to children....this is the regression.  This is what makes it so hard on families. 

Tuesday, October 21, 2014

Five for 5 - Oct 20

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:
1. Read newspapers through June 15.  I got through June 10, so it was something.
2. Clear out the expired coupons. Did it in my coupon book but not the extras.
3. Focus on Dan's room.Nope.  This is so hard to do.
4. Publicize my October fundraiser. Yes!  Missed it?  Go check it out here.
5. Finish my phone cleanup and get rid of stuff I don't need. Continued on this, but still have more to do.



Not a bad week.  I did some things.  So what are my goals for this week???

Saturday, October 18, 2014

October 2014 Niemann Pick Disease Fundraiser

The first year I joined the Niemann Pick family was the same year we diagnosed and lost Dan.  And with some coincidence, the fundraiser the National Niemann-Pick Disease Foundation was doing that year ended on the date of his death - 11-11-11.

Since then, I have held a fundraiser every fall - sometime between October and December - between Niemann-Pick awareness month and his birthday.

This year I am sponsoring an online only fundraiser.  It's called "Let's Nail NPC Research!"  This year funds are being donated to the NNPDF and Chase the Cure.


If you are on Facebook you can reach the event here.
If you are not on Facebook you can reach the party here.


What are Jamberry Nails?
Jamberry Nails are salon quality nail wraps that you apply in convenience of your home in less than 30 minutes. With over 300 designs to choose from, they are made in the USA with no harsh chemicals and are latex free. Wraps last up to 2 weeks on fingers and up to 6 weeks on toes. They cost a fraction of salon prices!

I created a special periwinkle ribbon wrap for October Awareness Month.  This wrap is only available from me, so if you are interested, please contact me.  You can use the contact form on the right side of this blog.


They are very easy to apply and remove with items you have at home: a hair dry, a pair of scissors, rubbing alcohol and some oil.  You can check out the application and removal process in the video below


Friday, October 17, 2014

Five Faces of Niemann Pick Disease - Week 3

It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here.





Three children from the same family. All affected.
Tyler above, Katie and Faith below.