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Sunday, August 31, 2008

Jenna's legacy page

When I first found out Jenna might have Trisomy 18, I visited www.trisomy18.org and www.trisomy18support.org to find out more information. The people there are wonderful. They provided support, answers to my questions and expressed their sorrow at our bad news.

I visited the Legacy pages, where parents share the story of their child. I cried over their stories of loss and heartache, hoping I wouldn't have to be one of them. When we found out Jenna was so sick with Trisomy 18, I decided no matter what decision we made, I was going to create her a legacy page so everyone I know could learn about her and donate funds to the foundation.

The Trisomy 18 Foundation provides support and information for parents who are facing a diagnosis, friends and family who loved ones facing a diagnosis and also for medical specialists working with Trisomy 18 families. It is also doing research to find a cure for the disease and prevention to keep it from happening to another family.

I waited until today to write out the whole story. It took me a while because I cried while I was writing some parts of it, reliving the moments when I was rocked to my core. The story isn't as beautifully written as I would like it to be, but I knew how emotional I would get if I immersed myself completely into the story.

I am not one to ask for donations, but this foundation is wonderful. They have helped me so much and helped others going through this, too. If you can make a donation in Jenna's name, I would appreciate it. If you can't, it's not a big deal, but I would love to have you sign the guestbook there. Either way, please leave me a comment here to let me know you visited. I am including the link to her legacy page.

http://www.trisomy18.org/site/TR/Events/General?px=1143701&pg=fund&fr_id=1070

2 comments:

Holli said...

It IS beautifully written.

Jessica said...

You did a wondeful job on Jenna's legacy page!!!