I'm sure a lot of you have seen "1,000,000 likes and I get a :insert something here." I was thinking last night, what if Connor got 1,000,000 likes. All we want is in return is that someone sees or hears the word Chiari. That's it. So, as usual, here we gol.
Thank you for sharing your photo on facebook. I shared it as well. Myself and 2 of my children suffer from chiair and its related disorders. God Bless you and your family.
ReplyDeleteKellie Haupricht
Delta, Ohio
Kellie,
DeleteI hope you and your children are doing well. I'm so glad you came across us. I just figured with every like and every share, someone will see the word Chiari that may never have...
Jodi
Great Job spreading awareness. I also suffer from Chiari and related disorders and it break's my heart to see our little ones suffer. May God Bless you through your journey.
ReplyDeleteHugs and Hope,
Jacki Klentz
Huntington, Arkansas
Jacki,
DeleteHow are you doing?
Jodi
My oldest daughter has Chiari's & a related genetic disorder. She was also born with it and had surgery when she was 9. I would recommend you take Connor to a geneticist. They know so much more about causes for Chirai's then they did 10 years ago when Jackie was diagnosed. Connor is such a cutie. Jackie struggled a lot in school because the staff just didn't understand how chiarians suffer. Hopefully, when Connor goes to school there will be so much more awareness. I am so glad you are doing this blog!
ReplyDeleteJessica, I had not even though of taking Connor to see a geneticist. Thank you so much. I will call his doctor right now and get a referral.
ReplyDeleteI worry very much about school.
How is Jackie doing now?
Great idea to get the word out there. . .not only is CHIARI an unknown illness to the general community. .. But not well known to the average doctors as well! So many people go diagnosed or misdiagnosed, such as myself for 20+ years. I can't tell you how many physicians wanted to and still want to treat me for migraines!
ReplyDeleteThanks for your awareness effort!