grammie
My blogs
Blogs I follow
- 22q11.2 Deletion Syndrome - VeloCardioFacial Syndrome/DiGeorge Syndrome/Shprintzen Syndrome
- Angel Heart
- chdbabies
- Cross Healed Hearts
- DUARTE FAMILY
- Elijah's legacy
- Elijah's Legacy- Digeorge Syndrome - A road less traveled...
- Grandmas Have Heart
- Hope for BraveHEARTS
- I HEART SOPHIA
- Lindsay's Blog
- memories
- mommy
- Our Little ANGEL
- VCFS and Genetic Support
- VCFS Families
- www.checkouthteviewfromhere.blogspot.com/
Gender | Female |
---|---|
Industry | Education |
Occupation | EMCC |
Location | Columbus, Mississippi, United States |
Introduction | 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. |
Interests | Getting information out about DiGeorge syndrome also known as 22q deletion... This disorder stole my 13 month old grandson-he was my SUNSHINE................ Information on how to start a foundation would be welcomed. |
Ask me about DiGeorge...