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Saving Eliza: This Little Girl Needs Help
Posted on 11/18/14 at 11:38 am
Posted on 11/18/14 at 11:38 am
Link
There's a link at the end of the video to give.
quote:
Most children wish for presents, candy and a party for their fifth birthday.
But all Eliza O'Neill wants is the chance to live.
The youngster, from Columbia, South Carolina, suffers from Sanfilippo Syndrome (Type A), a genetic and terminal disorder that means she lacks an enzyme vital for normal cellular function.
The condition eventually causes a lethal buildup of a toxic material - heparin sulfate - leading to learning disabilities and behavioral problems. Victims typically die before they are out of their teens.
There's a link at the end of the video to give.
3
Posted on 11/18/14 at 11:40 am to Darth_Vader
Oh shite! Maybe my kid has this too... he ALWAYS wears his tshirts inside out and backward.
Posted on 11/18/14 at 11:41 am to Darth_Vader
I can't watch the video... but is there a treatment/cure they're attempting to provide?
Posted on 11/18/14 at 11:42 am to yankeeundercover
quote:
They are raising funds for possible gene therapy; have so far gained $1.7m
Posted on 11/18/14 at 11:42 am to yankeeundercover
quote:
I can't watch the video.
It's a tough thing to watch. It will tear you up a bit.
quote:
but is there a treatment/cure they're attempting to provide?
From what I understand that's what they're hoping for.
Posted on 11/18/14 at 11:43 am to Displaced
Got. dayum.
How much does gene therapy cost?
How much does gene therapy cost?
Posted on 11/18/14 at 11:43 am to Darth_Vader
Sad. These stories piss me off. Little kids suffering really hurts to read and imagine.
Posted on 11/18/14 at 11:46 am to terd ferguson
quote:
Got. dayum. How much does gene therapy cost?
dunno, but the goal on their donations page shows 1.8 million.
hopefully they donate everything that they receive over the cost of the treatment to the research for a cure.
This post was edited on 11/18/14 at 11:46 am
Posted on 11/18/14 at 11:48 am to terd ferguson
quote:
Got. dayum.
How much does gene therapy cost?
How long has it been since you've looked at a medical bill? Summers before last my daughter had to be admitted to Children's Hospital in B'ham for staph infection on her foot. We were there for 3 days and she had minor surgery on her foot. The total bill came to something like $180,000.00. Thankfully we have good insurance or we'd have been ruined financially.
Posted on 11/18/14 at 12:12 pm to Darth_Vader
Gene Therapy is expensive as shite!
Just for a point of view:
My daughter spent 28 days in NICU because she was born 2 months premature.
Total bill for hospital and physicians was right at $500,000. Thank God for good insurance my out of pocket was only $6000.
Just for a point of view:
My daughter spent 28 days in NICU because she was born 2 months premature.
Total bill for hospital and physicians was right at $500,000. Thank God for good insurance my out of pocket was only $6000.
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