Project Shui for Tay-Sachs

Fighting for Aspen Brown - A Girl with Tay-Sachs

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Fighting for Aspen
from CBS 42 News

Rare Disease is Killing a Baby Girl

Reported by: Shanisty Myers

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

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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