A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Monday, May 4, 2015

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.

Sunday, April 26, 2015


To me, Easter is about the kids - coloring eggs, egg hunts and chocolate!  We had a bit of all 3!

Coloring eggs with a toddler can be quite messy....so newspapers and old t-shirts.  And lots of soap and water to get rid of the multi-colored hands!

Monday, April 20, 2015

April Goals - quite late!

This year I am going to do monthly goals instead of weekly.  But I will still follow the same pattern, reporting back how well I did.

So my March goals were:
1. Write at least 1 post a week. So this didn't happen.
2. Finish some of the old posts This didn't either
3. Clean up the sidebar. And neither did this.

1. Help my team expand. No one new
2. Get my supplies organized with the new catalog. Still not quite done.
3. Introduce 10 people to Jamberry. I think I did this.

1. Finish the September newspapers. Done!
2. Post some items for sale. Nope.
3. Active meal planning and grocery shopping. We did ok on this.

March didn't go all that well for the goals, but it was a great month overall.

Here are my goals for March:

Friday, March 27, 2015

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.

Wednesday, March 25, 2015

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.

Monday, March 23, 2015

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. 

Tuesday, March 17, 2015

Just when you think it is safe

Grief is never ending.  Some days are not as intense as others.  Some days are almost unbearable and other days are very functional.
A few weeks ago we were cleaning out the junk drawer and found this.