Thank you so much for your post and sharing your story with us. I cannot even begin to imagine how devastating this must have been for you, especially when it is something that could have been prevented. My heart goes out to you and your family.
I'm so glad you recognized the symptoms and insisted that your daughter get tested. You probably saved her life. By sharing with us here, you may have saved other lives as well. Saving one of us won't make up for your loss but it may well spare another family from the same heartbreak.
I will research this topic for a future post. Thank you for making us aware of this.