Today is Rare Disease Day: Alone We Are Rare; Together We are Strong

Today is Rare Disease Day.  David’s life was shortened by Battens Disease.  We know first hand the affect of living with one of these horrible diseases.   Today I am just writing to ask you to remember and pray for those who are boldly caring for and loving their family members affected by one of these rare diseases.  It can be a lonely battle.  The theme for this year is:

“Join together for better care!”

The following is a quote from the Rare Disease Website:

Many people with rare diseases can say that access to care involves not just one person, but a team. This year on Rare Disease Day 2014, we celebrate all who come together to support the rare disease community. From the doctors at a center of excellence, to the home health nurses who provide care on a daily basis, this year is about the unsung heroes who commit themselves to a community that might otherwise not get the attention it deserves. – See more at:

To those who joined with us to love and care for David we say thank you.

David’s Dad!