What is Trisomy 18 Edwards Syndrome
Trisomy 18 or Edwards Syndrome (named after John H. Edwards who first described the syndrome in 1960) is a genetic disorder. It is the second most common tri...
Join Now
|
New Here
|
Watch this |
| View More Posts |
Hi all, I'm new to this group, but have been on here and a member of other groups. May 12th my best friend gave birth to Madelyn, who has this disease. I am so heartbroken for her and her family. I've fallen in love with this little one already. We are just holding our breath every day hoping she'll be with us for one more, then one more. I don't know how to deal with this. I'd love to hear your stories and triumphs if you're willing to post.
Thanks! Posted on 05/15/08, 07:05 pm |
| 2 Replies | Add Your Reply |
| View More Posts |
Hello! Welcome!
My daughter, Stephanie had tri 18. Today would of been her 15th birthday. She past away after 16 wonderful months. She was the most presious baby. Her life was short, but wonderful. I honestly feel the reason she was around as long as she was because of the love we showed her. How is Madelyn doing now? I remember when Stephanie was born, the doctors didn't give her much hope. They told us she would die within 10 mins of taking her off her ventilator. She surpised us. She made it 16 months. I would love to know more about Madelyn. Please feel free to email me anytime. Mindy 
|
|
|
|
||
| View More Posts |
Hi,
My niece was born with T18 and we had 12 amazing weeks with her. My only advice to you would be to treasure every single precious moment you have with her. Message me if you need anything or just want to talk. Lots of love x
|
|
|
|
||
