HI. I just learned of this disorder today while waiting for my husband to have a blood test. A gentleman was there with his 19 year old step-daughter who has been diagnosed with this disorder and is considered to be in the last few months of her life. My heart goes out to him and his family as well as to you and yours. Thank you for sharing your story with us and for the strength and courage you display with each post. It is not an easy journey, nor one you would have chosen, but one you walk daily. May grace and peace accompany all of you on your journey with these two adorable kids.
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