Someone in our pediatric liver disease support group, Children's Liver Association for Support Services posted the story below years ago. The story was originally written in 1987 by Emily Pearl Kingsley about having a child with Down Syndrome. However, I find it applicable to having a child with a chronic liver diease. When I created Ashley's website , I posted this story and a short comment on the website. Today, I thought I'd share it here on Ashley's blog. Welcome to Holland by Emily Pearl Kingsley I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases i...
Ashley has biliary atresia, a chronic life threatening liver disease. Her disease has no cure, and her only hope for a long life is a transplant. We are trying to raise money for her liver transplant and other medical needs. Because her disease is unpredictable, her medical needs are unpredictable. It is because of this and the fact that we are unable to get life insurance for Ashley that we ask for donations. If you feel it in your heart to donate to Ashley's fund, we will be grateful.