Our son Rafael Elisha was stricken with a rare malignant brain tumor and after trying several mainstream treatments to no avail, we discovered that a clinical trail that was not approved by the FDA might have the potential to save his life.
A massive, widespread campaign was launched to garner 100,000 signatures necessary to request that the FDA grant us permission to use this therapy.
FDA did approve the drug for compassionate use
BUT IT WAS TOO LATE!!!
Our son was already in a coma and brain dead.
They call it compassionate granting BUT there was NO compassion in it for us.
In my opinion when families face NO more options, Compassionate granting should be a board review that takes 12 hours..and grants the use of the medication without having to waist time petitioning....
TIME is of the essence...LIFE is so precious!!
The good news is, the clinical trail we fought for did open up for others and we are hoping and praying for good news for those that are on that trail.
THE truth is there are no good answers for childhood cancer and we desperately need More funding and MORE research for safer and more effective treatments!!!!!
September is childhood cancer awareness month!
Please pray for all the kids in the world that are battling cancer right NOW
One hundred thousand Angels
poem written with tears by Elisha's Ima
One bright morning my little flower
a storm was coming our way
And you were so strong and stood it's way
And rest upon you the spirit of Hashem the spirit of wisdom and strength.
a storm was coming our way
And you were so strong and stood it's way
And rest upon you the spirit of Hashem the spirit of wisdom and strength.
You stood so tallWith dignity and gracefulness above all
One hundred thousand voices calling out your name
One hundred thousand hearts beating
All the same
a million cries and prayers yearning in the dark
Oh, son you lifted us to the highest heights
Higher than the stars
Your soul shine so bright
One hundred thousand people reaching out to G-D
One hundred thousand whispers uttering your name
A million psalms and mitzvot floating up above
Oh, son you lifted us to the highest heights
Higher than the stars
Your soul shine oh so bright
Oh, the light shine so bright
Our eyes can NOT see that sight
One hundred thousand angels come to escort you our son
Elisha our hero
You tikun here is done
How fortunate we are that you have touched our lives
Please check out for Elisha's brachos project
www.zichronelisha.com
My deepest condolences on this tragic loss. Perhaps we can organize a campaign to lobby for an increase in funding for cancer research at the NIH?
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