Summer time

It's mid summer.  That means 2 things in our house.  A birthday girl and the NNPDF conference.

I can't believe this girl is almost 2! She has her own unique personality and brings so much joy to our lives.

At the same time that we are celebrating, we are also experiencing wild emotional swings at the NNPDF conference.  While the conference is a great time to visit with people who understand, it is difficult to watch those affected.  There is so much more support and information now than there was just a few years ago.  

So for the next week or so, please think about all the families who are living with NPD and those families who have lost a family member.

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/

Absence

Sorry it's been quite on the blog recently.  I've committed to writing more in line with the reason I started blogging....to bring a voice to living with grief and losing a child.  Since Niemann Pick disease is so much a part of our life, that is also a focus.

We've been living in a crazy toddler world recently and I haven't had much of a chance to sit down at a computer and write.  My phone is great for short posts like this, but longer posts and photos don't work well.

Anyway, I just wanted to stop in and say "Hi"!  I have a few posts that I am thinking about over the next few weeks.

Reality Slap

Scrolling through my Facebook page the past week or so I've seen all the graduation pictures and end of year stories.

For some reason, this year I actually thought about it.  Dan would have been graduating from second grade. 

Obviously it isn't a miletone graduation, but it was a reality slap.

So for everyone who is graduating this year, or moving up in grade levels, congratulations.  Remember to tell them you are proud of them.

Love you Dan-Dan and miss you buddy.

Parade

One of the things we loved to do with Dan was to go to the Charlton Founders Day Parade.  We went rain or shine most years.  This parade is the first Sunday in June every year and is fairly short but features all the great parts of a parade... fire trucks, politicians, bands and thrown candy.

We took Shelby to her first parade this year.  It is little events like this that make me realize the difference in my kids.

Faron is holding Dan

Grandpa (my dad) is holding Shelby.

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.