We're sorry to say that on Thursday 17th April 2008 Ben finally lost his fight against Tay Sachs Disease.  In the end he left us very peacefully and he now has a new home at Wake Memorial Park where he'd welcome any visitors if you happen to be in the area.  Ben was 2 months shy of his 4th birthday (June 19th) and had been bravely fighting Tay Sachs for, well, his whole life, but noticeably for over the last 2 years.

It's impossible to describe the sorrow we feel at Ben's loss but we take heart in how privileged and blessed we've been to have him in our lives for as long as we did.  He taught his what it means to fight on and he'll live on in our hearts forever as well as though his sister Anna and brother Daniel.  Here's a few photos to remember Ben by which are from each December he had with us (2004 - 2007).

There is lots of information on Tay Sachs disease on the web if you want to read more.  The NINDS site is a good start for anyone who wants to read more and understand what Ben had to cope with.

Donations

So that something positive comes from Ben's passing we've asked that people do not send flowers but rather consider a donation in Ben's name to one of the following not for profit organizations.  There is a link to donate under the home page of each .

Ben got the most support from the Hospice of Wake County,  He had been under their care for over 18 months and we've never received a bill from them.  Ben's nurse, Mary, came whenever needed including many weekends and evenings and cared as much for Ben as anyone.  The work they do is phenominal and we owe a huge debt of gratitude to them.  We know donations made to the hospice will help other families like us through their time of need and are most deserving beneficiaries.  Our hearts go out to anyone who needs their services, especailly for the care of children.

When Ben was diagnosed with Tay Sachs Disease we did a lot of research and, being fortunate in the location of our new residence in North Carolina, were able to get him to see some of the best specialists in the field at places like Duke Hospital.  Alas the die was cast for Ben by that stage in terms of even research treatment as there remains no cure for Tay Sachs Disease at the moment.  Our focus has long been on bringing as much love and quality of life to him as we have been able, and to keep Ben as comfortable as possible.  We didn't get actively involved any support organizations for no greater reason than we never felt the need but there are two organizations that have always been available to us which focus on the educaton, prevention, research for cures, and support services for those affected by Tay Sachs Disease.  We have visited their websites often and found comfort and knowledge in both at various times.  If you would prefer to donate to help prevent and hopefully cure Tay Sachs, or support other families affected as we were then either the National Tay-Sachs & Allied Diseases Association or Cure Tay-Sachs Foundation would be worthy beneficiaries.

Thank you for your generosity,
Grant & Kylee Sainsbury.