Rare Disease Day is an awareness-raising event coordinated by EURORDIS at the international level and by National Alliances and Patient Organizations at the national level. February 28th, 2014 marks the seventh annual Rare Disease Day. On and around this day hundreds of patient organizations from more than 70 countries and regions worldwide are planning awareness-raising activities around the slogan “Join Together for Better Care”. Learn more at http://www.rarediseaseday.org/
#1 Amazon Mover & Shaker on its release day, “The Gift of the Ladybug” is a Bobby's Book (one of 250 children's books in the U.S. selected to help children cope) and one of the first "bibliotherapy"
Carole was inspired to write this story during one of her darkest moments. She was driving home from the Cleveland Clinic after hearing the doctor say, “Your son TJ may not see his second birthday.” In the days following that car ride, Carole put pen to paper and wrote “The Gift of the Ladybug for TJ.” She gave it to him for Christmas and was able to read it to him countless times. TJ peacefully passed away in April 2009 at fourteen months old due to complications from arare disease calledLeigh syndrome.
Inspired by TJ’s remarkable way of living, the character Polkadot (the ladybug), loves himself for exactly who he is. The book provided comfort to Carole and her family when they needed it most, and it helped them reframe how they looked at their circumstances. They would remind themselves that if TJ could face his fate with joy, laughter, love, and peace, then they could find a way to do the same.
Their wise little ladybug TJ gave a glimpse of what it is like to fly. Carole's hope is that because “The Gift of the Ladybug” was so instrumental for her and her family, it will help others, too. Learn more at:http://giftoftheladybug.org/
Carole is excited to celebrate National Rare Disease Day in Columbus, Ohio this year. “Rare Disease Day is special and close to my heart because of my personal experience and journey with my son, TJ,” expresses Carole, “Now is a great opportunity to spread awareness and join together to support people living with a rare disease and their families!”
About Author Carole M. Amber
Carole Amber is on a mission to celebrate ladybugs (children with medical differences)
Learn more at: http://giftoftheladybug.org/