Fighting for Aspen Brown - A Girl with Tay-Sachs
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What is Shavuot?
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Tay-Sachs Diagnosis:
Part I
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Genetics Made Fun
*Lysosomes The Movie
*Genetics 101 Video
Narrated by Alec Baldwin
Genetics 101 Article
*Inspirational Videos
*Beautiful Faces of Lysosomal
*Tay-Sachs Talk
*Connor Hopf Cure Tay-Sachs
*2010 Faces of Tay-Sachs
*My Soul Sister-Molly Grace
*Our Star Dakota
*Rachaeli's Song of Love
*Elise-A Child Living with Tay-Sachs
*Last Laugh
*Meet Gavin
Tay-Sachs in the Media
*Glee Sectionals
*Grey's Anatomy Sweet Surrender
*Law & Order SVU MERCY
*21 Below Documentary
Legal & Financial Issues
What is Wrongful Life?
Right to Live in the United Kingdom
How to Pay Medical Bills?
Social Security Disability
CHIPRA-Insurance for Kids
Medicaid Waiver Programs
Katie Beckett Medicaid
Who is Katie Beckett?
Why We Need Katie Beckett Waiver?
Eligibility for Katie Beckett
Katie Beckett in Georgia
Katie Beckett's Going Home
(from People Magazine 1981)
Treatment or Cure
Canavan Pioneers
*Gene Therapy
Jacob Sheep Sensation
Article in Forward-Jacob Sheep
*Stem Cell Transplants
Enzyme Replacement
Substrate Inhibitors
Should I Try Zavesca?
Letter for Insurance
Approval for Zavesca
Chaperone Therapy
In-Home Medical Care
Home Health Care
Respiratory/Secretions
Coping Strategies
Coping with Humor w/ Shui's Dad
Rachaeli's Story
Shocked by Tay-Sachs Article
The Project Shui Family
Mommy's Online Journal
Abba's Online Journal
Shui's Fun Pages
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Sitemap
Reported by: Shanisty Myers
10/06/10
The loss of a child is a parent's worst nightmare. A Hanceville couple is facing that reality. Their 14-month old daughter suffers from a rare disease.
Aspen Grace Brown lays down for an afternoon nap, but inside she's suffering. The 14-month old was recently diagnosed with Tay-Sachs, an extremely rare and fatal disease, where waste builds up in her cells and causes everything to stop functioning.
Aspen wasn't crawling or developing as quickly as other children her age, that's when her parents knew something was wrong.
"It's your worst nightmare knowing its not like a car wreck and go away, over the next year or so of her life we have to just pretty much wait and watch her die," Brandy Brown says.
While there is no cure or treatment for Tay-Sachs, the Browns are hopeful.
"This time last week we were planning her funeral and now we're planning her future," Keith Brown says.
"We have to travel to Peru to do this, they will take stem cells and hopefully they will attach and do in theory what they're supposed to do and regenerate," Brandy tells us.
The Browns know the surgery is no guarantee.
"This is a shot in the dark, but I know what's going to happen if we sit right here on this couch and do nothing but I don't know if we go there so we're going," Keith says.
No matter the outcome of Aspen's surgery, the Browns know their child is a true angel on earth.
“She's changed more lives in 14 months than I have in 36 years so she's just a wonderful wonderful beautiful human being and we want her with us,” says Keith.
They hope aspen touches the hearts of all who are willing to listen.
“I don't want to let go of her and send her back to God but if it happens we'll prepare for it, but hopefully she's going to be the cure and the miracle,” Brandy says.
The Browns need to raise 30 thousand dollars for Aspen's surgery in Peru. They're hoping her journey of hope will open the door to additional funding for the Tay-Sachs Foundation and others who are suffering from this rare disease. There are only six children in Alabama with Tay-Sachs. Keith keeps a blog dedicated to his daughter and their continued fight to save Aspen. To read Keith's blog go to www.helpforaspen.com
Also, if you would like to donate to Aspen you can do so by sending a check to
Aspen Grace Brown
442 County Road 597
Hanceville, AL 35077
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