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, July 30, 2012

It never ends....

Just when I thought it was a quiet, peaceful weekend.....

Friday July 27 was 7 years that Andrew Limer (NPC) became an angel. 

Wylder James Laffoon (NPA) was laid to rest at sea on Saturday July 28 in a beautiful ceremony.

Today, Monday July 30 is the 8th birthday of Calum Burdon in the UK, who lost his fight with NPC on December 26.

Today is also the 9th month since Gavin Lopez lost his fight with NPC.  During Gavin's final weeks, I read mom Kristen's blog daily, sometimes more frequently, just to know and understand what we were facing.  Little did I know that only 12 days later.....  So Kristen and I share a deep bond. 

Also, Thursday August 2 marks 3 months since Monica Taillefer in Canada grew her angel wings, free from NPC. And her 3rd birthday is Sunday, August 5.

Although rare, this disease is all over and on any given day or week there is probably an angel-versy or birthday.


Kaitlyn's father posted this beautiful verse today:
"He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away." (Revelation 21:4 ESV)Such a gentle reminder that all the pain and discomfort our children have is gone and they can be free to be themselves again.  Thank you Chip!

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