Time sensitive emergency funds needed

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Forum -> Children's Health

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View latest: 24h 48h 72h

cbg

Sat, Jul 13 2019, 8:06 pm

This is being posted with the permission of Yael.

Eliana, 2 year old baby from Aventura, Fl cannot stand or walk. After going to many doctors and specialists they discovered that the baby has a rare genetic disorder (SMA 2). If the disorder progresses, her ability to breathe and eat on her own might also be impaired...
The only medication that can save their baby is not covered by insurance and is about $2.2 million. ONE SHOT IS ALL SHE NEEDS TO REGENERATE THE MISSING GENE. They have until next Thursday to come up with the money to save their baby, which is the child’s 2nd birthday.
This treatment can only be done up to the age of two years old, past that date no approval from FDA
Please do what you can to support this great cause. Any amount is greatly appreciated.
May non of Am Yisrael ever be in this position.

Rabbi and Mrs. Galimidi
Aventura, Florida
We are personally involved in the case.

https://thechesedfund.com/esther/save-eliana

cbg

Sat, Jul 13 2019, 8:14 pm

Please publicize this to as many ppl as you can
Thank you

amother

Blue

Sat, Jul 13 2019, 9:06 pm

Please check out the SMA group on fb to see how others got this covered
Eta I thought it was for the spinranza. May Hashem help them all.
Tizku lmitzvos for helping the family in such a tense situation.

amother

Firebrick

Sat, Jul 13 2019, 9:12 pm

And people in the US continue to defend the medical system...

Tragic.

cbg

Sat, Jul 13 2019, 9:28 pm

amother [ Blue ] wrote:

Yes for spinranza
The new medication got FDA approval May 28 so I think this little girl will be the first outside of the trial
The company would have allowed it to be payed off in 5 yrs IF University of Miami would be the guarantors of this debt
The university refused

happyone

Sat, Jul 13 2019, 9:33 pm

please pass on to non jewish forums as well. I'm sure people will open their hearts. if everyone can post this link on their chat groups would help get the message out.

Sunny Days

Sat, Jul 13 2019, 9:33 pm

cbg wrote:

Wow. What yad Hashem. yeshuas H’ k’heref ayin. Just like a miracle cure was discovered in perfect timing for this little sweet girl, may H’ help them get the funds and send a complete yeshuah.

33055

Sat, Jul 13 2019, 10:53 pm

happyone wrote:

please pass on to non jewish forums as well. I'm sure people will open their hearts. if everyone can post this link on their chat groups would help get the message out.

It would also help if press releases were sent to all the news outlets that do human interest stories. They should be bombarded.

I would like to see this go national.

wordsmith

Sun, Jul 14 2019, 5:43 am

To echo what the previous poster said, you are in a major metro media market. That's good news. You need to reach out to the Miami Herald, the local TV news outlets, etc., and get some media coverage. This will help move the campaign along, especially given the very short time frame in which you are working.

That is what you need to stress - you have 4 days to raise $2.2 million to help a little girl with a rare genetic disease have a full life. (She should have a complete refuah shelama!)

33055

Sun, Jul 14 2019, 5:49 am

wordsmith wrote:

This could go nationally.

I have a lawyer friend who is his own PR person. Press releases are regularly sent to newspapers by him keeping his face in the papers making him a minor celebrity in these parts.

amother

Khaki

Sun, Jul 14 2019, 5:59 am

Just donated $10. And davened.

Geulanow

Sun, Jul 14 2019, 7:03 am

The March if Dimes and the Muscular Dystrophy Association help with disorders like this.

cbg

Sun, Jul 14 2019, 7:11 am

Thank You everyone
They have started a national campaign
We have connections with TV news and newspaper, B”H.

Please keep davening and send the link to as many as you can

Imagine the pain of these parents knowing there is something out there that can help their daughter live a full life and not being able to get it for her

Please keep them in your tefillot

Geulanow

Sun, Jul 14 2019, 7:14 am

The bottom of this link has other organizations that might help. https://rarediseases.org/rare-.....ophy/

cbg

Sun, Jul 14 2019, 7:41 am

Geulanow wrote:

The bottom of this link has other organizations that might help. https://rarediseases.org/rare-.....ophy/

Yes they’re in touch with all the organization
Still needs to come up with the full amount or an acceptable guarantor for the full amount

naturalmom5

Sun, Jul 14 2019, 1:36 pm

There are many billionaires in the Mexico Jewish community.. I was just speaking to a lady from there last night..

Maybe reach out to them

happyone

Sun, Jul 14 2019, 1:43 pm

I'm so glad people are so forthcoming . I hope this family can raise the funds to get this beautiful girl her life saving drug. when all is done they should raise the funds to sue our healthcare system for all its NOT worth. Shame on them for denying a proven, FDA approved drug. lifetime care for a child with a disability is way over the 2.2 million over a lifetime. This just infuriates me to no end.

OutATowner

Sun, Jul 14 2019, 1:48 pm

Donated. Hope they get the yeshua she needs!

allthingsblue

Sun, Jul 14 2019, 8:41 pm

Bump

steak4me

Sun, Jul 14 2019, 8:47 pm

https://m.youtube.com/watch?fe.....NxqH0

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