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.

Saturday, July 14, 2012

Life Celebrations

Another tough weekend in the Niemann Pick community.

Today is the memorial celebration for Naomi, who lost her fight about a week ago.

Matty in Australia lost his fight just a few hours prior to this entry.

A celebration of angel Emily's birthday is tomorrow.

I've only been writing this blog for a few weeks, and this is the second (of I'm sure what will be many) entries on our angels.  Please help spread awareness of Niemann Pick diseases.  More information can be found at the links on the left side of the page.

This was posted by NNPDF:
"Here for YOU Always!" This video montage and song was inspired by the sweet and beautiful Naomi Grace Tyrrell. This song written by Rachael Taylor, was inspired by Naomi and all of the children, young adults and families on their journey with Niemann-Pick Disease. As the family of Naomi Grace gather tomorrow to celebrate her precious life ~ please take the time to remember our loved ones, listen to this song, feel the love and know how precious all of our loved ones mean to us ~ and ~ that we will be "Here for YOU Always!" With love to you all ~ Nadine

But on a brighter note, today Johnathan's Dreams, a charity named for a child in California with NPC, is having a charity event to raise funds for NP.


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