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.

Monday, March 9, 2015

March goals (and an update on February)

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 February goals were:
Blog
1. Finish the draft blog posts. Nope.
2. Go back and finish some of the writing challenge posts, even though the Challenge was to write them that day. Nope.
3. Clean up some of the clutter on the blog page. Nope.
Didn't even blog much in February

Jamberry
1. Expand my team. Yes, added 1 team member.
2. Get a promotion. Promoted back to where I was, so I'll take it.
3. Use my Jamberry commissions to purchase the next item on the household wish list. Not exactly on the wish list, but used the commissions for the airfare for the NNPDF board meeting.

Life
1. Read the newspapers through the end of September. Got through August.
2. Finish cleaning Dan's room. Nope.
3. Take care of some Elk and NNPDF items. Oh yes, this has been all consuming!

Here are my goals for March:

Sunday, March 8, 2015

Please vote for Matt Painter

It's basketball season.  Every year Coach Matt Painter has been competing in the ESPN Infinity Coach's Challenge.  
 
 
 
Coach Painter supports the Smith Family BReaK Thru Fund, a family run organization that supports research into Niemann Pick Disease.
 
If Coach Painter wins this challenge, $100,000 will be provided for research.   This is the final round of the Challenge, and you can vote every day until March 15. 
 
It only takes a few seconds to vote, it is FREE, and you do not need to get on the email list, so you won't get any junk email.
 
Here is the link to vote: http://www.votemattpainter.com
Here is more info on the Smith Family BReaK Thru Fund: http://www.breakthrufund.org/

Saturday, February 28, 2015

Rare Disease Day


Today Is Rare Disease Day.  It is always the last day in February, the rarest month of the year.

This is my angel, my inspiration for this blog.  Please take a few minutes today to think of all those who have a rare disease.  Combined, those with rare diseases out number the number with AIDS and Cancer COMBINED!


I am wearing that I care a little differently this year.  My headband is from my friend Tia, who has a great shop at Hart of Karen.  My nails are 2 custom designed Jamberry nail wraps.  The deep purple was designed by Kacey Lynne Tuls for Quinn Madeline Inc, in memory of a sweet little girl.  The other nail wrap is the periwinkle one I designed for all Niemann Pick Disease families.


So what did you do for Rare Disease Day?