Medical and Care Fund for Atieh
Donación protegida
If you'd like to help out through other methods and not this website shoot me a message and I'll give you more info. This website removes any otehr account I put here. Thank you very much!
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For friends who don't know Atieh before this; this is her website:
http://www.atiehtaheri.com/
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I decided to write this as our campaign story and not just an update since it is a bit of big news and we will need your support even more (thus increasing the financial goal):
We are looking to transfer Atieh to the east coast, Rutgers University Hospital at NJ. When I heard of Dr. Bach from Atieh's neurologist in Iran, I was skeptical. But the more I research and the more I talked with people I am more convinced this is Atieh's best shot.
Rehabilitation of patients with neuromuscular disease, pulmonary disease, and home mechanical ventilation is the primary clinical focus of Dr. Bach, and I personally talked with several families around the globe who have enjoyed his help.
We still have to figure out many logistics, but Dr. Bach and I have had several contacts during the past few days and we will do our best to transfer Atieh to NJ as soon as possible.
We will have to do ICU air transfer; the cost is 39 K, not considering all other expenses we have to pay for our own air transfer, our stay in NJ while Atieh is there, her trip back home after recovery, etc.
He has promised us to get the trach out and help Atieh go back to her state before Nov 16t. Going from CA to NJ was not something I was looking into even 7 days ago, but here they are talking about sending Atieh with trach to a long-term care facility; this is not a life Atieh wants. She told us she'd rather end her life if we take her to long-term facility......
Here is Dr. Bach's website if you want to know more about him:
http://njms.rutgers.edu/resource_locator/find_people/profile.cfm?mbmid=bachjr
https://www.breathenvs.com/home-page
Before this incident, she was eating solid food, breathing with no need of machines, going to school, speaking well and giving talks, working with her computer, etc. She was getting weaker but this is such a sudden turn of events.
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This fundraising is for my sister Atieh. She is 29 yrs old patient with Spinal Muscular Atrophy (SMA) Type II. She is at Medical ICU of Cottage Hospital at Santa Barbara now and needs your help ASAP!
Atieh has been diagnosed with SMA type II since the age of 2. She now has severe scoliosis and has been dependent on a wheelchair for mobility over the past two decades. During this time and despite enormous challenges, she has lived a fulfilling life and is currently a Ph.D. student in computer engineering at UCSB.
She received her bachelor degree at Sharif University (graduated with honors) and afterward with her primary caregivers (our parents) moved to the United States in 2014 from our home country of Iran to pursue her dream of higher education. She was working in Apple as computer engineer during the past two summer while in the graduate school.
Regarding her SMA she was just referred to a neurologist to get Spinzara soon. Spinzara is a newly FDA approved medication for SMA patient which help them retrieve muscle functions.
She was doing ok until a few days ago but she choked on a tablet and was rushed to ER with an emergency trichotomy. She is now at the medical ICU (MICU) and breathing under ventilator. Initially, her heart rate was super high and her blood pressure was very low but these are getting better.
We need to transfer her to Stanford Hospital for various reasons:
-Most importantly: Here at SB they have little to no experience with SMA and don't know what her "normal" should be. However, at Stanford, there are so many doctors who daily deal with SMA and can be consulted about her case.
-Her right side of the heart is leaking she might need a clip which again they can't do it for her here. They neither have the specialty nor anything that worked for someone in her size.
-If she gets on Spinzara which started from Stanford she might be able to get off ventilator ASAP.
But all these cost money and insurance do not cover most of these. Her air transfer by itself will cost over 20k and we cannot afford to pay it while also we are paying for many other things. When she goes home, she will need lots of care and that would again need money.
Atieh is a very social person and loved by many in the community. Hopefully, with your help, she can receive the best care and go back to school ASAP.
If we get more than we need or we do not need the money anymore we will transfer the rest to SMA Family Foundation....
Thanks for your help!
------------
For friends who don't know Atieh before this; this is her website:
http://www.atiehtaheri.com/
----------
I decided to write this as our campaign story and not just an update since it is a bit of big news and we will need your support even more (thus increasing the financial goal):
We are looking to transfer Atieh to the east coast, Rutgers University Hospital at NJ. When I heard of Dr. Bach from Atieh's neurologist in Iran, I was skeptical. But the more I research and the more I talked with people I am more convinced this is Atieh's best shot.
Rehabilitation of patients with neuromuscular disease, pulmonary disease, and home mechanical ventilation is the primary clinical focus of Dr. Bach, and I personally talked with several families around the globe who have enjoyed his help.
We still have to figure out many logistics, but Dr. Bach and I have had several contacts during the past few days and we will do our best to transfer Atieh to NJ as soon as possible.
We will have to do ICU air transfer; the cost is 39 K, not considering all other expenses we have to pay for our own air transfer, our stay in NJ while Atieh is there, her trip back home after recovery, etc.
He has promised us to get the trach out and help Atieh go back to her state before Nov 16t. Going from CA to NJ was not something I was looking into even 7 days ago, but here they are talking about sending Atieh with trach to a long-term care facility; this is not a life Atieh wants. She told us she'd rather end her life if we take her to long-term facility......
Here is Dr. Bach's website if you want to know more about him:
http://njms.rutgers.edu/resource_locator/find_people/profile.cfm?mbmid=bachjr
https://www.breathenvs.com/home-page
Before this incident, she was eating solid food, breathing with no need of machines, going to school, speaking well and giving talks, working with her computer, etc. She was getting weaker but this is such a sudden turn of events.
_________________________________
This fundraising is for my sister Atieh. She is 29 yrs old patient with Spinal Muscular Atrophy (SMA) Type II. She is at Medical ICU of Cottage Hospital at Santa Barbara now and needs your help ASAP!
Atieh has been diagnosed with SMA type II since the age of 2. She now has severe scoliosis and has been dependent on a wheelchair for mobility over the past two decades. During this time and despite enormous challenges, she has lived a fulfilling life and is currently a Ph.D. student in computer engineering at UCSB.
She received her bachelor degree at Sharif University (graduated with honors) and afterward with her primary caregivers (our parents) moved to the United States in 2014 from our home country of Iran to pursue her dream of higher education. She was working in Apple as computer engineer during the past two summer while in the graduate school.
Regarding her SMA she was just referred to a neurologist to get Spinzara soon. Spinzara is a newly FDA approved medication for SMA patient which help them retrieve muscle functions.
She was doing ok until a few days ago but she choked on a tablet and was rushed to ER with an emergency trichotomy. She is now at the medical ICU (MICU) and breathing under ventilator. Initially, her heart rate was super high and her blood pressure was very low but these are getting better.
We need to transfer her to Stanford Hospital for various reasons:
-Most importantly: Here at SB they have little to no experience with SMA and don't know what her "normal" should be. However, at Stanford, there are so many doctors who daily deal with SMA and can be consulted about her case.
-Her right side of the heart is leaking she might need a clip which again they can't do it for her here. They neither have the specialty nor anything that worked for someone in her size.
-If she gets on Spinzara which started from Stanford she might be able to get off ventilator ASAP.
But all these cost money and insurance do not cover most of these. Her air transfer by itself will cost over 20k and we cannot afford to pay it while also we are paying for many other things. When she goes home, she will need lots of care and that would again need money.
Atieh is a very social person and loved by many in the community. Hopefully, with your help, she can receive the best care and go back to school ASAP.
If we get more than we need or we do not need the money anymore we will transfer the rest to SMA Family Foundation....
Thanks for your help!
Organizador
Atefeh Taheri
Organizador
Pleasanton, CA
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