Friday, January 6, 2012

For the living

In my book, I wrote about a special friend, a cyber sister. I wrote about the Chinese saying, "TUNG BING SIANG LIEN", loosely translated as birds of the same feather flock. E lost two children to Campomelic dysplasia, then she had to fight cancer. I knew her through my Campomelic family group, and walked along with her when she first knew she was pregnant with a CD baby. I walked with her with her baby died.

I wrote about hoping that lightning won't strike me again, and here E is, being struck three times. E survived and bounced back.

E is a fighter, she is involved with the global genes project. She is involving her daughter in the heart foundation jump rope for the heart. Here, she is mirroring me, I used to donate to save lives of a pair of co-joint aka Siamese twins and the deaf children in Kenya. I too, got my kids to help me.

Is it through bitter trials, that our lives are strengthened and we have become more resilient?

I love you E and H, and K.

World Rare Disease Day is a time when the global community comes together in unity, to build voice, awareness and support for the hundreds of millions of patients and their families affected by rare disease.

The Global Genes Project™ is a campaign that works to help individuals and organizations participate in this annual Day Of Unity. Global Genes Project™ has put together resources and ideas about how to participate and get involved, garner support or show your support!

Please also join the discussion at or for more information on how to get involved.

For questions related to Global Genes Project and World Rare Disease Day activities, please contact or click on the links/resources below.

Help fight cardiovascular disease and stroke by participating in our fund-r events and programs. Your help is needed now and the rewards can last a! Without your help, the American Heart Association's lifesaving research and community programs would not be possible. Please volunteer today!

Jump Rope For Heart
Click here to sign up to make your Jump Rope For Heart webpage

Some kids have special hearts, and you can help them by doing Jump Rope For Heart! Millions of kids across the country are jumping to help.

Hope and her school raise money for the American Heart Association by jump roping


  1. Ellen Hopes

    Hi Ann. Having been pregnant, six times myself and having had 5 losses I can understand. Responding to Megan who losed 6 babies,

  2. Ann, if I wasn't at Hope's dance school, I would cry! Thank you beyound words.

  3. We'd like to introduce "tip of the day" here on our Facebook page. Our tips and YOUR tips on how to get involved for World Rare Disease Day. Tip #1: Host a cupcake party. If you had 50 guests, you could put gummy bears in 5 of the cupcakes to represent the 1 in 10 that are affected by RARE disease. What's your tip on how to get involved? Please share yours and stay tuned for more ideas. Ellen