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.

Tuesday, August 4, 2015

Summer time

It's mid summer.  That means 2 things in our house.  A birthday girl and the NNPDF conference.


I can't believe this girl is almost 2! She has her own unique personality and brings so much joy to our lives.

At the same time that we are celebrating, we are also experiencing wild emotional swings at the NNPDF conference.  While the conference is a great time to visit with people who understand, it is difficult to watch those affected.  There is so much more support and information now than there was just a few years ago.  

So for the next week or so, please think about all the families who are living with NPD and those families who have lost a family member.

1 comment:

  1. Shelby just gets more adorable every day, Jill! There is a fairly good chance we will be moving back to Western NY within the next 6 months to a year. I am excited about that for a number of reasons, including being much closer to you - we can finally have that cup of coffee! I hold you, Faron, your family and all of the NPD families close to my heart. Know that much love and hope comes from me to all of you during the Conference and every day.

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