Elijah was a ray of sunshine in the lives of an entire family that didn't even know they needed and craved the warmth until he was born and brightened their lives. DiGeorge Syndrome claimed his sweet little life but his legacy will live on forever and his grammie would like your help. Grammie is fighting for other families that are facing the shock, the questions, the uncertainties of DiGeorge. Please visit her site at http://elijahslegacy.blogspot.com/ and let her know if you have something to add to her ever-growing network of support and educational articles about DiGeorge and please share it with those that may benefit from what she has to share.
Thanks, Grammie, your strength is an inspiration to us all!
About Me
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- Drew and Ava's Grandma
- Canyon Country, CA, United States
- I am a wife, mother and grandmother. My children are 32, 26 and 21. My oldest grandchild was born with DiGeroge Syndrome and with CHD, specifically interrupted aortic arch, VSD, and hypoplastic aortic root. He has just gone through his 3rd open heart surgery and is doing great! I never knew a person could feel such pure joy, such total helplessness or such raw emotion until we were blessed with his birth. I am looking for other grandparents or relatives of heart children that would like to chat or start a support group. Thank goodness there are such groups for parents of heart children and DiGeorge Syndrome, but I think grandparents have some unique issues and I know I wish I had someone else to talk to about them that really understood. My favorite quote from another grandma of a DiGeroge baby ~ "Don't miss out on a blessing because it isn't packed the way you thought it should be."
Annuual Heart Walk - Drew's 6th Walk
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My Family
My Three kids
Ava and Mommy sleeping
Rachel and Thomas
Two of my grandogs,Bibby and Bandit
Andrea and Dan
Halloween 2008
Ava with a baby in her tummy
Rachel
Drew
Ava
Rachel's High School Graduation
Anniversary Picture
When we were younger
At the Salt Fields
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Beautiful Bride
Ava Coloring
Uncle T and Aunt Lisa
Santa Drew
What, she's eating a leaf!
Me, my brother and my sister
Heather and John
Ava and Aunt Lisa
Drew sure loves Mommy
The cake I made for Ava's Jungle Birthday Party
A Boy and his Dogs
Ava and Grandpa
Great Grandpa and Drew
3 comments:
Thank You, Thank You, Thank You!
For helping with our cause.
One year ago tomorrow, we were on our way to Boston to have a pulmonary artery built for Elijah.
After 6 grueling weeks there we came home with high hopes for his future.
Little did we know, that the lack of knowledge in the medical profession here was so profound and would cost us so much.
I can't bring my ANGEL back, he's been gone just over 4 months now, but we're hoping to help others. Again, Thank You from the bottoms of our hearts...
Hoping you are all well and have a Happy Easter :)
Anne,
How is little Faith's family?
Haven't heard from you.
Hope you're all well.
:)Michelle
Hey,
Just wanted to pop in & tell you we just opened a new social network. http://elijahslegacy.ning.com
Please feel free to add info. encourage others to chat and make suggestions. Just b/c I no longer have my Baby Beans with me doesn't mean I won't always be his voice and would love to hear from and about all of you.
Thanks,
Michelle
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