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.

Thursday, October 10, 2013

Niemann Pick Angel

Just the other day I introduced you to Amber from New Zealand. 

Unfortunately she passed away at 9:40am New Zealand time on October 10.  

From her dad:
Another little butterfly girl has grown wings and flown away to play with her friends.
RIP Amber Ashlee Jelsma - our precious baby girl - we will love you forever.
3.00am 27/06/2011 - 9.40am 10/10/2013

From her mom:
A message to our Lysosomal Diseases family. Our precious Amber passed away peacefully this morning at 9.40am, 17 months after being diagnosed with Niemann-Pick Type A. She was surrounded by love & was comfortable. As with most things she did in her short life, her timing was impeccable & she passed during Niemann-Pick Awareness Month & Baby Loss Awareness week. Love to all who have also walked this journey.

Ambers Funeral service will be held at Newberry's on Kamo Rd on Saturday the 12th from 2.30pm. All who knew Amber are invited to attend to help us say goodbye to our beautiful butterfly girl.
Much Love, and thank you to all for your kind wishes.

In lieu of flowers, donations can be made in Ambers name to:
A photo from the Niemann Pick conference last year


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