Family facing daughter's death with faith, love
ISSAQUAH, Wash. -- On October 3rd, 2008, Elliott Benson joined the world.
"Elliott came out and she was just a beautiful smiling baby that was the picture of perfection and completed our family," says her mother, Becky Benson.
Like all parents, Becky celebrated Elliott's milestones like her first smiling, rolling over and growing normally. But one day, those milestones stopped.
"She couldn't hold her bottle. She couldn't sit, crawl, pull to a stand, and as things got further I wasn't satisfied that she would eventually catch up," Becky says. "We just went from doctor to doctor to doctor. And it was several months in before we got the Tay-Sachs diagnosis."
Tay-Sachs is a genetic, degenerative neurological disorder. For a child to have it, both parents must carry the recessive gene.
The gene doesn't always show itself.
The Bensons have a 5-year-old daughter, Skylar, who's perfectly healthy.
But for Elliott, once it set in, this seemingly perfect child went backwards.
"You can see as she's slumping here," Becky said, holding Elliott. "She's losing her abilities. She's losing all body functioning. These children eventually become blind, and deaf, completely paralyzed."
And eventually, they die.
There is no cure.
Elliott's doctor says she is the first Tay-Sachs baby he remembers in our region in 15 years.
And she's one of the most recently diagnosed in the world.
"We were entrusted with this beautiful angel because God knew we were the right parents to take care of her, and that we were the only ones that could love her this much while she was here," Becky says.
"And that helps me get by instead of asking 'why, why did this happen to us?' We just try and tell ourselves that we're special."
Tay-Sachs will likely take Elliott's life in the next few months.
She is 16 months old, and without life-prolonging measures, Tay-Sachs babies usually die between 18 and 22 months.
The Benson family chose not to prolong Elliott's life, knowing it would mean a feeding tube, oxygen and more while Elliott would be paralyzed.
Even then, she would only live to be about four years old.
"Not that she's not worth it. It's not that at all. We can't change it for her. When it's her time to go, it's her time to go," Becky says. "And when God is calling her home, I'm not going to enter into a bidding war with Him over her, because she was His before she was ever mine."
The Benson family hopes to attend a national conference first, with other families of these special babies.
It would be some comfort to be with parents who know the joy of a baby, combined with the heartbreak of Tay-Sachs.
The April conference is in Florida. Friends and neighbors are trying to help the family raise enough money to go, but they could use some help.
If you would like contribute, you can donate online to the KOMO Problem Solvers fund.
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For more information on Tay-Sachs disease, visit www.ntsad.org
"Elliott came out and she was just a beautiful smiling baby that was the picture of perfection and completed our family," says her mother, Becky Benson.
Like all parents, Becky celebrated Elliott's milestones like her first smiling, rolling over and growing normally. But one day, those milestones stopped.
"She couldn't hold her bottle. She couldn't sit, crawl, pull to a stand, and as things got further I wasn't satisfied that she would eventually catch up," Becky says. "We just went from doctor to doctor to doctor. And it was several months in before we got the Tay-Sachs diagnosis."
Tay-Sachs is a genetic, degenerative neurological disorder. For a child to have it, both parents must carry the recessive gene.
The gene doesn't always show itself.
The Bensons have a 5-year-old daughter, Skylar, who's perfectly healthy.
But for Elliott, once it set in, this seemingly perfect child went backwards.
"You can see as she's slumping here," Becky said, holding Elliott. "She's losing her abilities. She's losing all body functioning. These children eventually become blind, and deaf, completely paralyzed."
And eventually, they die.
There is no cure.
Elliott's doctor says she is the first Tay-Sachs baby he remembers in our region in 15 years.
And she's one of the most recently diagnosed in the world.
"We were entrusted with this beautiful angel because God knew we were the right parents to take care of her, and that we were the only ones that could love her this much while she was here," Becky says.
"And that helps me get by instead of asking 'why, why did this happen to us?' We just try and tell ourselves that we're special."
Tay-Sachs will likely take Elliott's life in the next few months.
She is 16 months old, and without life-prolonging measures, Tay-Sachs babies usually die between 18 and 22 months.
The Benson family chose not to prolong Elliott's life, knowing it would mean a feeding tube, oxygen and more while Elliott would be paralyzed.
Even then, she would only live to be about four years old.
"Not that she's not worth it. It's not that at all. We can't change it for her. When it's her time to go, it's her time to go," Becky says. "And when God is calling her home, I'm not going to enter into a bidding war with Him over her, because she was His before she was ever mine."
The Benson family hopes to attend a national conference first, with other families of these special babies.
It would be some comfort to be with parents who know the joy of a baby, combined with the heartbreak of Tay-Sachs.
The April conference is in Florida. Friends and neighbors are trying to help the family raise enough money to go, but they could use some help.
If you would like contribute, you can donate online to the KOMO Problem Solvers fund.
---
For more information on Tay-Sachs disease, visit www.ntsad.org