A Sad day....

Henry Miller, 20 year old young man diagnosed w/ FG syndrome lost his battle for his life yesterday around 7:35pm. Henry had been in the hospital critical for about 2 weeks but then was starting to show some signs of improvement so I was caught off guard when I read the email from his Mom Mary that Henry had passed away yesterday. I have never met Henry or his Mary but got to know them on the FG family list serve. I have heard many stories and seen pictures of Henry and have celebrated Henry's victories in my heart with Mary and today I cried for the loss of Henry. My heart breaks for the pain and the GREAT loss that the family is dealing with. Henry reminded me lot of Jeremy, the stories Mary would tell. I would look at similarities they had so much in common, Henry had a heart defect had open heart surgery when he was younger, Henry also had severe scoliosis and had surgery to place a rod at an early age. Please say a prayer for the Miller family as they deal with the loss of Henry's precious life.