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, October 2, 2012

Young Adult Onset of NPC

October is Niemann-Pick Disease Awareness Month.
I met a wonderful woman at the conference in Nashville.  Rozetta's son Chuck was diagnosed with NPC at age 18 and died at the age of 36.
At the time of Chuck's diagnosis, there were only about 90 people with NPC and very, very few with the late onset.
A few years after Chuck died, Rozetta wrote a book about living with adult onset.  It is a story of hope, love, faith, courage, heartache, strength and perseverance.
We purchased a copy at the conference, and we have both read it.  Although it brought us to tears, it is a story that is well worth the tears.
Here are Rozetta's words this October:
My son went to be with Jesus in the month of October. It has now been 7 yrs. October happens to be awareness month for NPD. So, I am counting on all my family and friends to help spread awareness about this extremely rare disease. If you have not purchased my book yet, it is a great way to help. ALL PROCEEDS GO FOR RESEARCH and I have been told the book is a help to anyone going through a difficult time in their life even if you are not connected in any way to this disease. You will find HEARTACHE, JOY, FAITH, LOVE, STRENGTH AND COURAGE all in this book, how pets played a hugh part in getting us from day to day and it could even be a help to CAREGIVERS. It covers Chuck's life from beginning til end and includes a lot of pictures along the way. So, PLEASE HELP OUR CHILDREN. Chuck had the young adult onset of NPC but the younger children rarely make it to the age of 10. Go to the following link to purchase a copy of this book and contact me and I will make you get a copy. Blessings and Love to you all. FOR THE CHILDREN In Chuck's memory. http://www.lulu.com/spotlight/chuckNPC
If you wish to purchase a copy, please use the link above.  There are multiple versions, from bound to digital.  If you have issues, leave a comment here and I will make sure you get a copy.


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