100 DAYS...

~ A hundred days without you...

Yet , it seems

like only a minute

Life is too long

Without you in it... ~

As the hours trail by

The wonder of you fills my eyes

Fills my senses

And leaves me empty all the same

It feels as though life can never be good again

Everywhere we look

There seems to be nothing but pain

They say...This is life

I say :

No, just something like it...

I miss you, Beans

Love,

Grammie

Please help us spread the word about DiGeorge syndrome/22q11 deletion.
If more physicians were aware, the possibilities of getting proper, lifesaving care, would be so much greater, no matter where you live.
In our case, the lack of knowledge by physicians in every area of this syndrome cost more than we were prepared to pay- his life.
My understanding is that in the northern U.S. and in other countries the doctors are schooled in genetics, if only to have the number to connect you to the right doctor for the right part of the syndrome. In Mississippi, however, there proves to be an astounding amount of ignorance on their part. An ignorance that the physicians we encountered in Mississippi were all too proud to flaunt. Information WE found through the internet (that would have saved Elijah) was brushed aside as if we were the ignorant ones. One pediatrician in Columbus, Mississippi's God complex stood in the way of Elijah getting the help that he needed!
KNOWLEDGE IS KEY!
DiGeorge does NOT have to be FATAL!
Through much research and corresponding on the internet, we are finding that so many are living pretty full lives with DiGeorge Syndrome and 22q11.
Would someone please explain this to the medical profession?
More than anything I want to start a Foundation For DiGeorge Syndrome just so the information is all available, far and wide...to be able to help others that are just learning that their child/grandchild will be living with lifelong health issues ...to be able to tell them, where ever they live, who the endocrinologists , geneticists, cardiologists, neurologists and primarily, the best pediatrician - one who is familiar with the NEEDS of these children- and every other NECESSARY doctors are in their areas . And there SHOULD be a team of these doctors within a fifty mile radius of every big city-Not just in the north.
Please help us spread the word...

http:/www.elijahslegacy.blogspot.com/