About This Site

This site is dedicated to my wife Jolynne.

Jolynne was diagnosed in January 1998 with Niemann-Pick Disease Type-C.  This is a rare genetic disease that effects the way that cells store and metabolize cholesterol.  It is eventually fatal.

For more information see "About Niemann-Pick" or visit the National Niemann-Pick Disease Foundation.

I have placed some personal information on this site not to embarrass or alienate anyone (especially my wife).  The information on this site is meant to document her and our journey through the discovery of her illness and to make available our knowledge (however lacking it may be) as to certain processes and procedures involved in a terminal illness.

I did not receive Jolynne's express permission to make this available since, by the time I had the idea for this site, she was not able to communicate her wishes.

I do know that Jolynne was one of the most compassionate people I have met.  I also know that she would do anything in her power to help those in need.  That is why I feel confident that she would approve of all that is contained herein.

If you are here because of a similar situation, then know that I  sympathize with all that you are going through whether it is as a victim or as a caregiver, friend or family member.

And we know that God works for the good of those who love him, who have been called according to his purpose.

Romans 8:28 NIV