Ben’s Story Revisited
AnonymousMay 31, 2006 at 11:41 am
In January 2003, my son Ben was diagnosed with GBS. He was 9 at the time. I posted an appeal to this discussion group for ecards. That became the beginning of a long and detailed chronicle of how Ben and we coped with — and conquered — GBS over the next two years. That thread was lost when this website went down several months ago. I’ve managed to reconstruct most of Ben’s thread from cached pages on the web and my computer. I’ve posted that reconstruction on my website at: (Link deleted by administration)
It’s not complete and still needs some work, but most of it is there.
If you’re new to this discussion group and have a child or loved one with GBS, I hope Ben’s Story might provide you with some insight about what to expect, and some encouragement that, even in bad cases, things will get better.
AnonymousJune 4, 2006 at 5:09 pm
This is the first time I have vistited this site and was quite touched by your story of your son. I was a child of GBS . I contracted it when I was 7 and was one of the first children to ever get it in the San Francisco bay area. It lasted from 7-10 and took quite a while to recover. I too had been on several respirators, and lived on a ventillator for a while. I had several relapsis but by 12 had pretty much completely recovered. I had also been through plasma pheresis, radiation,chemotherapy (the works) and took loads of prednisone. It took a while to recover but there is hope. Don’t get me wrong, every time my legs fall asleep I do freak out and wonder it it will start all over again. I am now 30 and have had 2 kids. Luckily I don’t suffer from any residual affects, have osteoporosis from the years of prednisone but otherwise am fine. Hang in there. I know how your son feels. I remember my childhood as depressing and unfair. I was very lonely and couldn’t understand why this happened to me. There is hope. After I medically recovered at 10, it took 2 years for my strength to build up. I was always the slowest runner in my class and the weakest player at sport. I was nicknamed “Turtle” in my junior high gym class. Your son sounds like a strong young man. I am glad he is doing well in Karate. I wish you the best in everything.
AnonymousJuly 12, 2006 at 3:52 pm
I can’t believe I had to rejoin the forum. Nice to see you are still posting – I lived through Ben’s story and I know your journaling of it has helped other parents.
Ethan is now 16.5 years old. He’ll be a senior in high school and already has a good idea about where he wants to go to college (I won’t say where because I don’t want to jinx him).
We’re going to Israel at the end of this month – our last visit there as a family in 2000 ended with Ethan deteriorating on the trip home and winding up at Children’s Hospital of Philadelphia with GBS. We’re only hoping for no crisis this time around (although the political situation is disturbing enough).
All the best,
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