It's not something you would ever want to be in but it can certainly be rewarding too.
Since I have started this blog I have had four people contact me who have children with Larsen's that were seeking information.
And recently I had a friend of mine who has a little boy that was in Belli's class for a few years contact me about a friend of hers whose just found out her son would be having spinal surgery.
I hate that Belli's and I have been through all that we have but I LOVE that I am able to help those in need of someone to talk to!
See, it can be rewarding!