Thanks to Lindsay for providing this link ....
It has very useful information for families of children with genetic deletions.
www.vcfsef.org/articles/en/pdf/Factsheet
Verona-Juventus
1 year ago
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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.
Thanks for visiting me and taking the time to say such sweet things!! Im trying to follow, but it wont let me!! I have no idea why!?!
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