EB Butterfly Reunion

For those who haven't heard, during the weekend of February 11-13, 2011, befriend EB will be hosting the first ever EB Butterfly Reunion! It will be held at Universal Studios in Orlando Florida. The deadline to request tickets is December 27, 2010. Each family who registers will receive 3 free passes and have the opportunity to purchase additional tickets at the same discounted price we are getting them for! For more info on the event, tickets and hotel info, please visit the web site:

 

http://ebbutterflyreunion.com/index.html

Happy Birthday Garrett!!!

HAPPY 6th BIRTHDAY GARRETT!!!

We love and miss you very much!!!

you can read about his birthday celebration here

BBC Lineline Appeal for DebRA

This was recently on the TV station BBC in the UK:

Peace, Love and Aurbey Joy

 Oct. 6, 2010 - Nov. 17, 2010

"At 7:45 p.m., exactly six weeks to the day of her birth, Aubrey Joy Oberlin became an angel in heaven. She was surrounded by love to the very last minute. Rest now, baby girl. Rest now in peace. "

Visit her Facebook Page

Heaven's Newest Angels

This week Heaven gained two new butterfly Angels.

Joshua James Gibson lost his battle to RDEB on November 2, 2010.  He was 8 1/2 years old.  You can view his tribute video here:






Then, just yesterday, Elizabeth (Elle) Cady Pop lost her brave battle against JEB-H due to complcation of the bone marrow transplant she received just 42 days prior.  You can read her journey and leave a message for her family on their blog by click on the picture below:

"When someone you love becomes a memory, that memory becomes a treasure" 

~ unknown