The end of October

The end of October Awareness Month is here.  That doesn't mean that I stop talking about Niemann-Pick Disease or my experience or asking for financial support for the families being helped by the NNPDF like we were.  Here are the final quick facts for this year:

October Awareness - Vision of Hope

The National Niemann-Pick Disease Foundation has been around for 25 years, providing support to families and funding promising research.

In recognition of that, the Vision of Hope Campaign is encouraging donations of $25 in recognition of the 25 years.

In addition, I am giving 25% of all Jamberry sales during October to the NNPDF.

And I can't forget about the information squares for this week:

It's never easy....

I know I vowed to write more. Living with a preschooler, working, and spending time with family have a way of making the time fly.

Until recently.  The first few weeks of April have been hard.  Really hard.

5 children, 1 week

Life is difficult, seeing this cluster reminded me of how difficult life can be and know much we need to just live it.

Five families need to move forward without someone.  It's times like these I am happy to be a part of the Niemann-Pick community. We all "get it" and many of us have been where these families now are.

So I ask all of you to please hold these families in your thoughts, as they will need support to get through some of the hardest days they will ever know. 

It's October - Post 4

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

It's October - Post 3

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

It's October - Post 2

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

It's October

Ok, so we are over 10 days into the month.  Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

IMAGINE

There is this brand new 10 minute movie floating around.  I can't watch it because the emotions run too deep.

IMAGINE was created by a teenager in the UK who found out that there are 4 kids in his town that have NPC.  He was able to get help from prominent people in the film industry to put together this short film to help raise awareness and funding support.

This movie follows Millie, a young girl who has an NPC diagnosis.  It is from her point of view but shows how the disease affects the entire family.

Please take 15 minutes and read the information on this link and watch the movie.

http://www.imagineshort.com/

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

How One Family Helps Another

Our Niemann Pick "family" is close, even though we are spread across the world.

Yesterday, I hosted a Jamberry fundraiser for Kelly, who lost her daughter Ashlyn a few weeks ago.  The 10 or so ladies and I had a great time giving ourselves manicures and sharing memories of Ashlyn and Dan.

You can still help.  The online portion of the fundraiser is open until at least Mother's Day.  Kelly will be saying her final goodbyes to Ashlyn on Monday May 11.  The online fundraiser is on Facebook and at my website.  At least 20% of all sales are going to help cover funeral expenses.

Oh and today, Monday May 4, is the last day to pick up this great Mother's Day Gift Set (although you don't need to be a mom or give it as a gift to your mom).  Four exclusive products (3 wraps, 1 lacquer), taffy, and pedicure tools!

But that isn't all.

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.

The Newest Angel

Tristan Lindsey
04/09/2002 ~ 03/25/2015

Tristan Lindsey, beloved daughter of Tracy & Derrick Lindsey, lost her battle with Niemann-Pick Disease type C on March 25th, 2015 at the tender age of almost 13 years.

In remembrance of her daughter, Tracy lovingly wrote:
"It is with a peaceful heart that I share our daughter Tristan peacefully returned home to our Father in Heaven. She was such a blessing to our family and everyone who knew her. Her beautiful smile and eyes that could say a million words with out her ever speaking, will forever be missed. I know she's running, playing and eating everything in sight. Thank you everyone for loving our baby and loving us as well.
~ Love the Lindsey Family"

I had the pleasure of meeting Tristan and her family in Nashville a few years ago at the NNPDF conference.  The family was easy to spot in their bright yellow shirts.

Arrangements have been made for Tristan. The visitation will be Friday from 6-8 and the service will be Saturday at 2 at Croley Funeral Home in Gladewater, TX.  Her obituary is here.

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."

A time of Goodbye

It's been awhile since I posted one of these awful entries....and this one is as bad as they come.... and it isn't even timely.

Three handsome boys.  Two are gone, only one remains.

Brisan Stults (in the center), lost his fight with NPC on March 4, 2014. Brother Parker (on the left), lost his fight on January 23, 2015.

There isn't much more to say other than head to the family website at http://www.bripardun.com and read the touching stories.

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.

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.

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. 

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.

The Life of Dan - Age 2

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 on the date in the video.  Dan was a few weeks shy of his second birthday.  We had undergone a lot of testing which didn't yield any results.  He remained undiagnosed for another 2 1/2 years.

 

 

 

So here is Dan when he was just about age 2.  Besides his speech, he seems pretty normal.  You can't really see it, but his abdomen is larger than usual.  That was his only obvious symptom of Niemann Pick Disease, Type C.

Can NPC actually SAVE a life?

These past few weeks there has been extensive media coverage of the Ebola outbreak and the 2 Americans who were infected and brought to Emery University for treatment.

What isn't being covered as much is the potential research into Ebola.  The CBS news article linked below made its rounds through the Niemann Pick community because it explains how Ebola transfers from individual to individual in fairly non-medical terms.

So why am I writing about it?  I've copied the important paragraph below: