iPad Apps for Special Needs Kids Every child has a special need.  They are ALL experiencing the world for the first time!  Please click on the above iPad Apps link and give the PDF document adequate time to download as it contains 12 pages with over 60 entertaining iPad, iPod and iPhone application options.  ENJOY!! […]

Meet JADE McKENNEY Hi there! My name is Jade and I am 7 ½ years old. I have a big sister and a big brother whom I love and who love me very very much. Just like Harper, I have CDKL5. It took almost two years to figure out my diagnosis. At that time (July […]

The connection of a father to their child is much different from that of the mother.  The mother has the opportunity to be with the child 24/7 for 9 months, which I understand is not always pleasant, especially for me.  However, a father sits and waits through the emotional chaos of pregnancy and tries to […]

In a conversation with an Mary B’s Organic Bakery today I was asked by Mrs Mary what Harper loves.  I was stunned that I did not have an immediate answer.  I stumbled over my words and came up with some kind of redirection to the conversation but hung up the phone wondering WHAT DOES HARPER […]

PRESSURE Love’s such an old fashioned word  And love dares you to care for  The people on the edge of the night  And love dares you to change our way of  Caring about ourselves  …. This is our last dance  This is ourselves   Over the past two years we have searched desperately for a way […]

\”…We all Want to CHANGE the World…\” Dustin and I have taken two very different interests but yet we have stumbled together in the process to find that it is all intermingled.  Dustin’s focus is politics and mine has been medical.  Both interests led us to oddly enough, food, and we find it is actually […]

Meet Amber http://cdkl5amberandus.blogspot.com/!  Her Birthday is April 22nd.  She is one of Harper’s CDKL5 friends.  Her mom Carol Anne Partridge is an amazing woman who not only has she managed to raise an wonderful family but, she is a board member of the International Foundation for CDKL5, founder of CDKL5 UK for research for a cure, […]

What do ya think?  Do I look older to you?  MY birthday was a huge success!  Thank you EVERYONE, family, friends and  supporters for joining me in celebrating this very special day!  THE ONLINE BIRTHDAY AUCTION will continue until April 15th.  Visit www.facebook.com/dollysfoundation to bid!   Today I discovered that despite my disorder which would suggest […]