We want to better serve parents and caretakers of children with Chiari. Rather than starting a private group which anyone is welcome to do . we decided to add a discussion category as well. There have been some amazingly helpful and insiteful past threads which we will be re-categorizing to this category over the next few weeks so they are more easily fond by these Hero Parents and caretakers. We of course want EVERYONE to feel free to contribute.
This will be a great benefit to the site. Also, here is a link to the Ben's Friends caregivers support site if anyone is interested. It is important to take care of yourselves as well. https://www.facebook.com/groups/caregiversupportcommunity
I think that this is a welcomed discussion. I will let my husband know. He is my hero and continues to stand by me. Wouldn't have made it this far without him.
So happy to see this come up! Both my daughter and I have Chiari, so it would be nice to have other parents to talk to. Neither of us have been decompressed, so there's information that only parents of decompressed children would be able to answer for me. Thank you!
I so needed this! My friends try to be there for me, but its nothing like talking to parents who have a Chiarian warrior that understand how I feel. Thanks for not forgetting about the parents and caretakers.
That sounds like an amazing resource for parents! When finding out about having a chiari its hard enough to find your not alone gives you strength that you can make it through !!!
Though I’m not a caretaker, I think this is a wonderful addition.
Both my daughter , Son and I have Chiari, and none of us have been decompressed up to this point , my son has just been diagnosed waiting to see neurosurgeon . Would be nice to connect with everyone.