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.

Wednesday, October 15, 2014

The Life of Dan - Eating

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 is a bit long, but it is one of my all time favorites!  Here is Dan at about 20 months.  He is eating sherbert because the lactose in the milk made him uncomfortable.  We were never really able to determine if it was a lactose issue or a symptom of Niemann Pick Type C.

At the time of this video, we were still undiagnosed and had never heard of Niemann Pick Type C.

Tuesday, October 14, 2014

Five for Five - Oct 13

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 through June 7. Done!
2. Finish the last rainbow baby post. Done!
3. Focus on Dan's room. Nope.
4. Finish my NPD postings. Done!
5. Do a phone cleanup and get rid of stuff I don't need. Partially done!



A really good week!  So what are my goals for this week???