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DELTA, OH (Toledo News Now) -
First-time parents in
Delta are making the best of a diagnosis that will take their baby boy from
them much too soon.
Chris and Sara Brown found
out they were pregnant around this time last year. Now, their son's rare
stomach condition has made it a challenging, but fulfilling, year.
"We were thrilled," the
Browns said. "It was the first grandchild on both sides of the family, so Abram
was a big hit."
Sixteen weeks into the
pregnancy, excitement turned into fear and worry.
"We went in to find out
the sex of our child, and our doctor said something was wrong," Sara explained.
"It didn't look right on the ultrasound, and she immediately sent us to a
It wouldn't be until Abram
was born on November 8, 2012, that doctors would truly know what was wrong.
"On day 10 they were able
to diagnose him," Sara said.
"It's a rare genetic
disorder called Galactosialidosis," Chris added. "It's a condition where he can't
The condition is so rare,
it was only discovered in 2008, and there have been 50 documented cases.
For the Browns, the
diagnosis was heartbreaking. Their son was given six months to a year to live.
"You think about all these
things you're going to do with your child, and…some of those things are going
to be taken away, so it was hard," Sara said.
Sara has taken time off
work as a teacher to be at home with Abram during the day. He eats and gets
oxygen with the help of tubes. Pain medications make him comfortable.
Unwilling to let the
diagnosis change their outlook on theirs and Abram's life, the Browns live to
make him happy, and have embraced and cherished every moment they have with
"How can you not be proud
to have this as your son?" Sara asked. "He works so hard, he's touched so many
lives. He's cute as can be. So how can you not just be beamingly proud? I feel
like that's what we are, every step he takes."
Friends and family are
hosting a benefit for the Browns on May 10 in Wauseon. It's more than just a
way to help with mounting medical bills, the Browns see it as a way to say
thank you and celebrate the little boy named after the Abram Tank – they wanted
a strong name after they found out something was wrong.
"I think it's a time to
celebrate Abram's life," Sara said. "It's a time to say thank you to all those
people who have been by our side, all those prayer warriors that we've had who
have not given up hope on Abram, just like we haven't."
The benefit will be held
May 10 at St. Caspar's Catholic Church in Wauseon, from 4:30-8 p.m. There will
be burgers, brats, and hot dogs available for dine in or carry out, a 50/50
raffle and items for auction.