Welcome Jenbolima! Who do you know w/ DGS or are you just browsing? I would love to have more contact with each of you. I also host www.elijahslegacy.ning.com/( a social network for digeorge and other genetic syndromes and 'life or something like it' at blogspot.
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.
Welcome Bonnie!
ReplyDeleteThank you for your interest please pass it on...
Welcome Jenbolima!
ReplyDeleteWho do you know w/ DGS or are you just browsing?
I would love to have more contact with each of you. I also host www.elijahslegacy.ning.com/( a social network for digeorge and other genetic syndromes and 'life or something like it' at blogspot.
You write so beauitifully. My heart feels your pain.
ReplyDeleteAnne