Diapers

Dan was in diapers from the day he was born (premmie) to the day he died (size 5/6).  I was fortunate to have family help pay for them for many years and then NYS Medicaid reimbursed me for some as well. 

Those families with children who have special needs have to find a way to pay for them until at least age 3, sometimes longer. 

 

The need is there for more  than just those with special needs. Can you believe that 1 in 3 families have to make a choice between buying diapers and buying necessities like food or electricity.

Let's make sure all babies have enough diapers.  Order some holiday gifts at http://jillflinton.jamberry.com and help support No Bottom Left Behind Diaper Bank!

Can you imagine?

I'm guessing that most of you have lost someone close to you. Whether it was a parent or a close friend.

I don't know how many of you have lost a child.

It is hard to imagine if you haven't experienced it. Now try imagining losing 3 children.

Unfortunately for one family, that is the reality. Three of their four children are NPC angels.

The Smith family created the Smith Family BReaK Thru Fund in honor (now memory) of their 3 children fighting NPC - Brandon, Riley and Keaton.  Over the weekend, they said goodbye to Keaton.

The Smith family had a close relationship with Coach Matt Painter at Purdue University.  Coach Painter won the Infiniti Coach's Challenge this year, and just  last week picked up the big check.

Please keep the family in your thoughts this week.

You can read more about the BReaK Thru Fund here: http://www.breakthrufund.org/

You can read Keaton's obituary here: http://www.soller-baker.com/memsol.cgi?user_id=1588635

A Second Angel

This has not been a good week in the Niemann Pick community.  We lost another child to complications this week.

This is a family I have met a few times, we only live an hour or so apart.  Every child lost hurts, but this one hurts just a little more.

Ashlyn joined her brother Zachary on March 25.  She was almost 7 years old and had recently started school.

You can read her obituary here.  Although not requested, I'm sure they could use some support at their GoFundMe page to cover some of the funeral expenses.

March Madness Season

It's March...which brings basketball.

 

For the past few years, Coach Matt Painter at Purdue University has been participating in the ESPN Infiniti Coaches Charity Challenge for $100,000.  He supports the Smith Family BReaK Thru Fund.  The Smith family has three children affected with Niemann-Pick Type C, with one already losing his fight.   This year, he won the Challenge!  Thank you to everyone who voted.  Keep an eye out for it next year.

But the Smith family isn't the only family fighting. 

More goodbyes

I have written about Isaiah Atkins a few times:

2014 Rare Disease post here
A Random Act of Kindness here

Unfortunately, I am not writing a happy post now.

Isaiah "Zay" Adkins
01/24/2004 ~ 02/05/2015

Isaiah Adkins, known lovingly by his family as Zay, lost his battle with Niemann-Pick type C on February 5th, 2015 at the tender age of 11 years.

Zay will always be remembered as a treasured son, and a beloved sibling who was always ready with a sweet smile for anyone who had the pleasure to know him in his short time with us. 

His mother, Angela Tackett, writes adoringly about Zay and shared these thoughts about him:

"What comes to mind about Zay is that he never met a stranger or other families whose hearts he didn't touch. He loved the Lord and praised him often. As Zay grew, he was full of love and spread happiness to everyone he was ever in contact with. He is greatly loved and missed by all."

December 26

Some people call December 26 Boxing Day.  Others call it "Return All The Unwanted Christmas Presents" Day.

As I was scrolling through my Facebook feed yesterday I realized that for a few families it is very bittersweet.

An Extra Stocking

Last year I found this wonderful post about teaching kids the true meaning of Christmas - not the toys or the gifts - but being kind and helping each other.  I saved the link all year and I am now sharing it with you.  Shelby is still too small to understand, but posting it here will keep it accessible in the years to come. 

Sunshine and a Summer Breeze: An Extra Stocking

 

 

So what holiday traditions have you started for your family?

Five Faces of Niemann Pick Disease - Week 9

There are still more faces and families, so I am continuing this for another few weeks.

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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

Five Faces of Niemann Pick Disease - Week 8

There are still more faces and families, so I am continuing this for another few weeks.

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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

Beautiful Faith (above) and handsome Riley (below) are angel siblings.

Guardian Angel Trek

A few months ago I wrote about five rainbow children - babies born after the loss of another child.  Today's post is about Trek and Vesper.

You may know mom Chelsea and dad Jarrett from their travels around the world or the books Jarrett has written.


 Like me, Chelsea is experiencing life with a girl - and all the pink frilly things!

Not only does this beautiful girl have are angel big brother Trek looking out for her, she also has 2 other older brothers who love her.



Stop over and read Chelsea's blog at oursonnylife.com to keep up to date on Vesper.

Five Faces of Niemann Pick Disease - Week 7

There are still more faces and families, so I am continuing this for another few weeks.

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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.

Five Faces of Niemann Pick Disease - Week 6

There are still more faces and families, so I am continuing this for another few weeks.

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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

 

Handsome Zachary (above) and beautiful Ashlyn (below) are from the same family. 

Both brothers, Matthew and Timmy are affected.

 

 

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Five Faces of Niemann Pick Disease - Week 5

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.

 

 

 

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.

 

 

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.

Five Faces of Niemann Pick Disease - Week 2

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.

Both Cody and Kayla have NPC