Verona-Juventus
2 years ago
Wednesday, January 14, 2009
Subscribe to:
Post Comments (Atom)
My Blog List
-
-
Blogging Again8 years ago
-
Happy NEW YEAR!!13 years ago
-
Praying for Baby Joseph!14 years ago
-
Fall Time15 years ago
-
-
About Me
- grammie
- I have 3 beautiful children. Janet-24, Jacob-21 & Jordyn -16 . I am the grammie of Elijah or, "Beans".He was a victim of a rare genetic disorder called DiGeorge syndrome. He was born 10-18-07 , weighing in at 3# 11oz, passed away on 11-29-08 weighing in at 10# 3 oz. Elijah's story must be told because this syndrome was unheard of by us and everyone we know, before Elijah. We lacked information and were on a roller coaster of survival for 13 mos. & 11 days all filled with LOVE,JOY and FEAR.... I am on a mission to create a foundation for DiGeORGE Syndrome patients and families.
I am so truly sorry to hear about Elijah's death. It saddens me to no end. It makes me understand how my own parents must have felt those early days when I was so in danger of losing my own life. If there is anything more I can do for you and your family, PLEASE let me know! I live my life one day at a time, as they say, as I know each day is precious. Keep in touch!
ReplyDeleteI understand that this is a new disorder, like so many genetic disorders. I just wish it got more exposure, like down's syndrome gets now. It seems to me that the more people are exposed to the situation, the better they are to deal with the ailment. I have corresponded with Dr. Shprintzen, who found the disorder, and am planning on writing my book still, he has agreed to write the forward. It will take me a bit of time, since I don't have a computer readily available yet, but I keep thinking of things to write. If you want me to put anything in the book that you think could be of use to people, please let me know. God Bless.
ReplyDeleteI am so sorry for your loss, "Beans" was an adorable little guy. For you and Janet and his daddy, my heart goes out to all of you. You will all be in my prayers.
ReplyDeleteHi Grammie,
ReplyDeleteYou are a brave woman and my heart breaks for you. I understand the heartache of having a sick grandchild that means the world to you and also having to witness and stand by while your own child goes through such unbearable sorrow. I will keep you and your family in my prayers.
I am grandma of a DiGeorge baby. He has had a long hard time of it, but is doing very well today. If you'd like to talk or vent or just know that there is another grandma that understands part of what you went through, please contact me at stimacs@att.net or on my blog at gmashaveheart.blogspot.com