Guestbook
My stepsons were diagnosed with AGS yesterday, although we still have to get the spinal tap done, but they are 8 and 6 and have been going through testing and uncertainty since they were 1 year old.
I was just wandering if anyone knows about lifespan expectancy. Everyone has a million questions and that seems to be the big one. I would also love to talk with anyone who can share their own experiences.
My email is JEnid21@msn.com
Hello all.
I am a 16 year old girl who had 2 sisters with this syndrome, sadly both of my sisters passed. I was hoping some of you would know a registerd charity in which i can send my donations too.
Also, having lived with 2 beautiful sisters who had this condition then passed I would like to start helping other children who are/were in my position i hope to set up an online support group but I am in need of people who can help me, this support group is not solely for children but from my experiences this is what i feel i can help with, but also i can get my parents to help and advise any first time parents dealing with a loss or this condition.
I do hope you all don't ignore this, after all i know the effects of the stress and bottling up this can do, my e-mail is always there for any person who wishes to speak about anything, it always helps to have someone who understand and who can guide and support.
Tanisha x
Listen up sweetheart,
A co-workers sister had a baby with microencephaly - I made casseroles and held her hand for 2 years, until his death.
A co-worker of my mother had a child with leukemia. I joined the walkathon and raised funds for the family.
You know what I didn't do? Find a website where people were already suffering and add to their death count.
I am with Gillian Raymond on this.
Dear friends,
I would like to underline that this space has been built with big efforts in these years to join and unite, to share informations and experiences and don't to divide us because only all together we can win this challenge.
Consequently all have to use the necessary fair-play !!!
A big hug at all families
Roberto